Sweet home, Jerusalem

In the hydro pool this week

First, we are at home, thankfully, having avoided the morass of the ER and the hospital ward ["Status report: Status epilecticus"]

Last Friday night, the hard seizures reached 3-minute intervals. My med drawer only had Diazepam which expired June 2018 and the pharmacies had none in stock. (Doctors tend to discourage its use at home so there's not much demand for it). 

But I was determined to keep Haya at home. So I relied on the pediatrician's assurances that those dates are probably posted just to compel us to buy fresh meds. And I gave it.

Folks, you can now rest assured that those expiry dates truly are, at least in some instances, somewhat advisory only. That 2018 Diazepam worked like a charm, at least for us. Haya slept seizure-free for some eight hours.

(Apparently, not all drugs are as resilient as our Diazepam, but undoubtedly, many are. So check before you discard. I'm so thankful - but have no idea why - I didn't include that Diazepam along with all the other expired drugs I recently tossed.)

I've still got six more doses here but for now paracetamol and Advil (ibuprofen), given alternately throughout the day, have been adequate.

That's in addition to her anti-epileptics and cannabis, of course.

While I can't say she's fine, relative to what she just endured, things look positively peachy.

She floated calmly in the hydrotherapy pool where we take her for an hour on Monday, although, "slept" would also be an accurate description.

And has even done her 45 minutes of assisted walking a couple of nights this week..

Today her carer took her outside for her first time since her deterioration began.

Here is Haya, sleep-floating (at the top) and bundled up for her walk (on the right).

Status report: Status epilecticus

I don't normally write in midst of a horrific period for Haya. 

But while I type this, she is in nearing 48 hours of what would undoubtedly be deemed by a hospital team as Status Epilepticus. Basically, that's the epileptic's nightmare - non-stop seizing - and I figured I ought to record it. 

Until this struck us, she had been doing extremely well and was down to only 3-4 seizures a day. I was growing ridiculously optimistic about her new med, Fycompa, already dreaming about her possible future milestones. 

Tomorrow night, her Fycompa dose rises from 4 mg a day to 8, as her neurologist instructed us. That's the therapeutic dose we've been aiming for these past six weeks.

But now I don't have the same high hopes I had for it's success as I did two days ago. And in any case, it will be some time before the higher dose kicks in.

Haya right after a seizure today

UPDATE December 25, 2020 - Friday afternoon 2:30 pm: Her seizures have worsened so we have one foot out the door in the direction of the ER. The memories of our last stay there are still so vivid and horrible. And I know the experience will only be worse now in the midst of our huge Covid wave. 

So before resigning ourselves to the ER, I  am making last-ditch efforts to get her under control at home with paracetamol, Advil and raising her Vimpat back to 100 mg. Insider tip: Avoid those paracetamol suppositories even when swallowing is problematic. They can escape from the rectum quite a while after administering. There's no way of knowing how much was lost so you can't re-administer. It just happened here!

As a last resort, I have prepared our Diazepam rectal tubes that have an expiry date of 2018. I've read the instructions carefully and studied the diagrams. We can't find any new stock in any of the pharmacies here. Haya's pediatrician believes they're probably still potent as drug expiry dates tend to be exaggerated. 

I also called her neurologist who had succinct advice: "Get her to the ER." 

In three days we've gone from counting the number of seizures/day to the number of minutes between seizures! 

Will update - hopefully from home. Meanwhile here is Haya, whacked by her ordeal.

Forgotten justice

Image Source: Amos Ben Gershom/GPO 

Israel just hosted "heavyweight" Trump administration official Jared Kushner, with PM Netanyahu lavishing fulsome praise on him: 

President Trump's Abraham peace initiative has already created a whole series of breakthroughs. Jared you've successfully reinforced American leadership in the Middle East and in Middle East peacemaking. I think you've greatly enhanced American standing in the region... I thank you Jared and I want to thank all of you for assisting this great effort. We will never forget it. Thank you all. [Link]

At this point I believe we can safely conclude that the "peace initiative", "the whole series of breakthroughs" and the "groundbreaking visit" of which our PM raved will certainly not lead to justice for our murdered child, Malki, during the Trump era.

Justice is not a "breakthrough" on the Trump Middle East team's agenda. And, make no mistake, it was a team comprised of individuals armed with the power, influence and, we would have presumed, the moral compass to propel them easily toward that goal. 

We certainly did our utmost during the past four years to galvanize them in that direction. We pleaded with them - via emails, personal messages, tweets and a front page newspaper ad - to demand that Jordan extradite mass murderer, Ahlam Tamimi.

Jordan has steadfastly refused to comply with the US Department of Justice's demand for her extradition. A determined Hamas operative, she murdered two US citizens in the 2001 Jerusalem Sbarro bombing in which a total of 15 men, women and children perished. She openly boasts of that achievement to this day. 

But neither the existence of a valid extradition treaty signed in 1995 by the US and Jordan, nor the formal US demand for her have moved King Abdullah II.

Trump administration officials could not care less. To wit, this week, David Schenker, the Assistant Secretary for Near East Affairs, U.S. Department of State, marked 20 years since the Free Trade Agreement between Jordan and the US in a commemorative ceremony.

He subsequently gushed this tweet

I have developed a deep appreciation for the friendship between our two countries and Jordan’s role as one of the United States government’s most important partners.” #FTA20Strong

Is this the sort of treatment that the US tolerates from its other "most important partners"? Defiance, rejection of an extradition treaty, the harboring of a murderer who is one of the FBI's Most Wanted Terrorists? 

Undoubtedly not.

Jordan has enjoyed undeserved kid-gloves treatment from the US government for long enough. It is high time that justice and enforcement of lawful treaties were given the respect that is due them.

President Rivlin joins the pack

Image Source

Last week, during Chanukah, our President joined the list of Israeli politicians and dignitaries who have honored Aleh or Adi with a visit. 

Like the others, some of whom I've mentioned (To quote Diana Ross: I'm still waiting and Unexplained upheaval at Aleh?), Reuven Rivlin showered Adi with fulsome praise. But, his hyperboles so far surpassed those who preceded him they bordered on parody. 

Example:

"During my visit here today, you all gave me so much hope, so much love, and so much light... Doron,[Doron Almog, CEO of Adi] my dear friend, an IDF hero and an Israel Prize Laureate, what a wonderful torch you have lit here, this little slice of godliness. It is a lighthouse of giving, a lighthouse of love, a lighthouse of faith. Here, you do miracles, in these days, at this time, and you know how to light many candles from just one small jug of oil. Thank you for establishing the ADI Negev-Nahalat Eran rehabilitative village, this precious light that guides us all."

I mean, really, "this little slice of godliness"??? Mr. President, I believe it's time for you to find a new speechwriter. 

The President is now the recipient of a letter of complaint which I sent him, just as I did the Minister of Health Yuli Edelstein, the Minister of Education Yoav Galant, and the Dutch Ambassador to Israel, Hans Dokter. 

The first two never responded - despite my repeated resends - while the last sent me a lame defense of institutionalization.

Regarding the Adi vs. Aleh confusion [Give up? Never]] I'm afraid there have been no fresh revelations. My Personal Messages on Adi's Facebook page inquiring about the split now number 3. Adi's responses remain at 0.

And here is Haya engaged in one of her favorite activities. It's right up there with her hydrotherapy, her walking and her eating. 

Now, I realize she is 25 years old and those achievements are unimpressive at this stage in her life, but they thrill me nonetheless. So here she is kicking away.

Shalit Deal Redux?

Convicted terrorists on their way to freedom 
in the 2011 Shalit Deal [Image Source]

"Those who forget the past are condemned to repeat it"

George Santayana, Spanish philosopher, in 1905.

It's clear that Israel's leaders and media have been determined to forget the price we have been paying these past nine years for the infamous Shalit Deal. 

Numerous of its 1,027 releasees resumed their bloody activities, murdered additional Israelis and are currently re-imprisoned. Their precise numbers are unpublicized and unknown because that is the way this government wants it.

One releasee, Ahlam Tamimi, the mastermind of the Sbarro pizzeria massacre in which my child perished, lives free in Amman where she actively incites to terror and is a fugitive from the US Department of Justice.

Israel's government and media studiously avoid any mention of her.

All this evasion and silence are contributing to another likely disastrous prisoner release. Today we learn that hundreds of convicted terrorists will probably exit Israel's prisons in coming days in yet another lopsided swap reminiscent of the Shalit Deal ["MK warns emerging prisoner swap with Hamas will free hundreds of terrorists", Times of Israel, December 14, 2020]

The prospective release is, predictably, presented by the media as a gift, an opportunity that Hamas is handing us because of its COVID-triggered unrest. Will Israel's public swallow the same malarkey it did in 2011?

The scenario is all too familiar: PM Netanyahu is grappling with his own internal political woes just as he was in the summer of 2011 when thousands took to the streets to join the "social justice protests" over price rises and falling standards of living. 

The Shalit Deal was the candy he tossed the public. It worked like a charm - his popularity soared.

Will Israelis sit by and hand Netanyahu the same lifeline as it did then? Will his cabinet once again sit idly by as convicted terrorist murderers walk free to murder more of our loved ones? 

We can only hope that enough ethical, rational compatriots will heed Santayana's warning and stop the madness.

Give up? Never

Haya, yesterday

My daughter Haya, now 25 years old, has just mastered a new sign - one which she devised independently. 

It had me and her speech pathologist snapping away elatedly with our phones to record the "miracle". She's been doing it a bit at the sessions for a while, but less emphatically than she did yesterday. 

Previously, the only sign she had made was pointing her index finger for "yes" and occasionally making a fist for "No". We taught her those signs many years ago. 

But, as I noted, the new one is her own creation and means "give me food." She only uses it when seated in her chair, wearing a bib and awaiting my feeding her. 

Normally, we give her a spoon and she feeds herself so there's no need for this new sign. She only uses it when I'm feeding her - which I only do during the speech therapy session. 

So it's an appropriate and clear sign. Here it is on the right in a photo I snapped yesterday.

Another milestone reached this week was the start of the higher dose of her newest med, Fycompa. She went up from 2 mg. pills to 4 mg. pills for the first time.

I have a request. Please remember these milestones when you next read Aleh's or ADI's disingenuous propaganda about "severely disabled" children requiring institutional care to achieve their "fullest potential". 

I named both organizations - Aleh and ADI - because I am still befuddled as to their identities. Are they connected to each other? Are they separate but co-existing? Are they at war?

 

I have messaged the ADI Facebook page with that query but there's been no response till now. 

Hmmm. Predictable.

Activist groups to UN: Israel denies its disabled their human rights

Israelis with disabilities protest in Jerusalem

Sometimes, or more precisely, rarely, in Israel, we are treated to a sliver of good news about our citizens with disabilities.

That happened on Thursday when Haaretz revealed that a coalition of 30 advocacy groups representing people with disabilities submitted a report to the UN committee overseeing compliance with the International Convention on the Rights of People with Disabilities.

They did so to mark the International Day of People with Disabilities. 

Israel signed that Convention in 2007 and ratified it in 2012. Its Ministry of Justice recently submitted an official report to that same committee which these organizations deemed "very partial and lacking".

According to this "alternative" report, Israel is blatantly violating several clauses in that Convention while only minimally implementing others.

It cites huge/major gaps between the convention and the status quo by providing an updated, detailed picture of the rights of people with disabilities in Israel in multiple realms including equality, access to justice, health, employment and respect for privacy. It noted the absence of a comprehensive program to reduce those gaps. 

"The State of Israel... has yet to absorb/assimilate the principles of the treaty and doesn't see it as a "compass" intended to guide its relationship, its laws, its policies and its actions toward people with disabilities neither in the legislative realm nor in the practical realm", write the authors of the alternative report, which has received limited attention.

According to Edith Saragusti, director of monitoring and policy implementation at Bizchut, Odelia Fitoussi (chosen this week to serve on the UN committee overseeing the implementation of the treaty) and social activist Yoav Kraim, notwithstanding significant changes in the last three decades, people with disabilities still do not fully and equally enjoy human rights and basic liberties as required by the Convention. They continue to suffer from discrimination, exclusion and denial of rights.

The two reports describe two different worlds.

Clause 19 of the treaty, for instance, determines that every person with disabilities has the right to live independently in the community "with choices equal to others " and with the support and assistance needed.

While the official report quotes Israeli legislation without reference to segregated residences which the convention opposes or to the number of people living in them, the "alternative" report determines that in fact Israel "violates the right to independent living within the community" and notes that the section dealing with "in-community living and the personal aid package" in the Law on Equal Rights for People with Disabilities has to date not been legislated due to governmental opposition.

"Nearly 20,000 people with disabilities still live in institutions, without the ability to make basic choices such as roommates, when to go to sleep or what to eat. And that's without getting into the widespread abuse, neglect and violence toward people with disabilities in some of the institutions," says Saragusti.

While this report is undoubtedly a step in the right direction, Doron Almog is still doggedly pursuing the entrenchment of that very institutionalization which the Convention decries.

Toward that end, he posted the following news on his new, revamped ADI Facebook page:

"Last week, Israel and Taiwan signed an historic Memorandum of Understanding on Cooperation in Volunteering, the first step in creating a strong and mutually beneficial framework for volunteerism between the two countries... Major General (Res.) Doron Almog, Chairman of ADI Negev - Nahalat Eran, attended the special ceremony in Tel Aviv as the guest of honor, pledging the rehabilitative village’s full cooperation and support in pushing this wonderful initiative forward..."

Please note: This sort of volunteerism is maligned and discouraged in most other developed countries where institutionalization is recognized as the evil it truly is.

A propos Doron Almog and his mushrooming enterprise, ADI, the mysterious chaos there seems to be intensifying. The strange posts on the Aleh Facebook page about which I wondered in earlier posts have vanished - as has the entire Facebook page!

If you have any information about the Aleh vs ADI confrontation please share it with me. The suspense is becoming unbearable!

D-Day

[Image Source]

To mark the International Day of Persons with Disabilities, our national TV station (KAN 11) is treating us to a series of programs dealing with the topic of disabilities. 

Each one that I've watched was a gem and it was difficult to choose the best for sharing here. Nevertheless, I settled on the two below:

First - 

סליחה על השאלה ילדים | ילדים עם עיוורון | שידורי בכורה ביוטיוב

On YouTube here
 
It's a segment of the program "Sorry for the Question" in which blind children answer questions about their lives.

And -

The documentary Master Class which premiered at the Docaviv Film Fetival of 2017 portrays a workshop conducted by actor/director Arnon Zadok for a group of people labeled cognitively disabled or having special needs who attend a day center operated by Chimes Israel. 

Once a week for two hours, the group attends this acting workshop. It is unique in that everything is done by the participants. They act and film themselves. 

The documentary (see it on YouTube) is comprised solely of their material and focuses on several participants who present moments from their lives, unrealized dreams, fears and concerns. The film describes a world parallel to ours but pours a magical light on the truth.

It demonstrates, yet again, why I'm such an avid fan of Israeli documentary films.

Meanwhile, back at the ranch, we are monitoring Haya closely for her reactions to the med changes we are making for her.

Her neurologist responded within a few hours to my query yesterday. He advised us to return her Vimpat to its previous dosage of 150 mg. We had lowered it to 100 mg. with the goal of gradually removing it entirely.

He advised us to wait with lowering it again until we've reached the highest dose of her new drug, Fycompa.

Confession: We've decided to return to 150 mg only in the morning and remain with 100 mg at night. Haya seems to be seizing a bit less but is more fatigued than usual. That's to be expected with Fycompa, according to the drug info. Her dosage is still the lowest possible, 2 mg. 

So there's a chance that we'll enjoy better times with the goal dosage of 8 mg.

For now, our hopes, bets and prayers are on Fycompa - a drug we'd never even heard of a short two months ago.

Deinstitutionalization, Aleh and ADI

Mandy Leighton Bellichach is the Chair of Bizchut's Board
[Image Source]

Bizchut, the leading organization devoted to promoting the rights of people who have disabilities in Israel, sent out a mailer this week emphasizing its focus on deinstitutionalization. Music to my ears!

Their message ended with this:

We help people and their families handle the many bumps on the road from the institution to a life of dignity and equality in the community. In the year 2021, Bizchut's goal will be to double and even treble the number of  people with disabilities who will receive assistance to live - like everyone else - within the community... [Hebrew original - my translation]

Now juxtapose that with the two large institutions, the places formerly called Aleh Negev and Aleh Jerusalem, both now renamed ADI which Doron Almog now heads. 

He is expending great efforts to promote and fundraise for them. He has dwarfed Aleh which, as I've written earlier, now consists of only the Gedera and the Bnei Brak branches and is lagging woefully behind in its PR. 

With Rabbi Yehuda Marmorstein at its helm, Aleh's Facebook page has for the past five days sported a link to its purported website. But when one clicks on it, the ADI website comes up.

Here's hoping this "battle" for our children and young adults with disabilities results in a victory for neither of the combatants but rather for Bizchut and deinstitutionalization.

More med misery

The medicinal changes Haya is enduring began taking their toll on her some five days ago - many tough seizures throughout the day. 

Occasionally, acetaminophen gives her a few hours of relative calm. And, of course, the swimming pool worked its wonders on her yesterday. She performed there beautifully - see video below.

Haya in the pool with me

But otherwise it's an ordeal for all of us. We're aware that any changes in meds can throw these children off kilter. Yet, on the other hand, this may signal the need to return to her previous regimen and abandon the Fycompa.

I wrote to the neurologist for advice a few hours ago and await his response.

Aleh and ADI: Allies or adversaries?

Wonder of wonders: the information I requested in mid-August from the Ministry of Labor, Welfare and Social Services under the Freedom of Information law arrived!

The very welcome spreadsheet has statistics regarding the residents of institutions for people with disabilities which are under the Ministry's supervision. Tallies and dates for residents who were quarantined, ill with the virus and passed away from it are all there.

I'll cut to the chase: Twenty-one residents had succumbed to the virus as of November 25, 2020. One was from Aleh Gedera and a second from Aleh Negev.

Why is this being concealed from the public?

In the meantime the apparent fist-fight between Aleh and the newly created ADI shows no sign of resolution. So, if you go to Aleh's Facebook page and click on the words "Updated website address", you will not arrive at Aleh. Instead you reach an ADI site about its two institutions: ADI Jerusalem and ADI Negev Nahalat Eran. 

You'll also see plenty of adulatory words about and photos of Doron Almog.

If you return to that Facebook page and click on "Aleh has updated their info in the About section", you'll arrive at a page telling you in Hebrew: "The requested page cannot be found"

I'm sure there's a simple explanation for the chaos - which I'm eager to know already.

The crucial question is: How is this upheaval affecting the children in Aleh and ADI's care? And will it reduce government funding of those institutions?

Are we, perhaps, on the cusp of the start of deinstitutionalization of children with disabilities in Israel?

Praying we are.

Forever fifteen, forever missed

The last photo taken of Malki as she took part in a birthday party of
a classmate on the night of August 8, 2001. Malkiwas murdered at
2:00 pm the next day. 

A slightly different version of this essay was first published on the Times of Israel website a few days ago under the title "Forever fifteen". Malki's birthday is November 27.

---

Today we mark yet another agonizing birthday. 

My sweet daughter Malki would now be thirty-five years old if Hamas operative Ahlam Tamimi had made some misstep on August 9, 2001.

But Tamimi was and still is a seasoned, determined, efficient and blood-thirsty terrorist.

In the Sbarro bombing which she confesses she masterminded and which she calls “my operation”, seven babies and children perished with nine adults - some parents alongside their offspring. It was an unmitigated massacre.

Never could we have imagined that her murderer would now be free as a bird - and protected by a ruler who is coddled by both the United States and Israel – King Abdullah II of Jordan.

Tamimi's stated determination to kill Jews is matched only by the determination of world leaders to ignore our pleas to correct the travesty of justice that Tamimi's freedom embodies.

Our letters, phone calls, op-eds, tweets and front-page advertisement have fallen on deaf ears. They have only elicited excuses, evasive double talk, or total silence from most of the people who could easily assist us if they cared to.

There are no obstacles in their path: 

• Legislation has existed for years empowering the US to arrest, try and convict terrorists in US courts under US law if they kill a US national, which Malki was. 
• In 1995, an extradition treaty was signed and ratified between the US and Jordan and accepted valid by both countries. The State Department still takes that view. 
• Tamimi was added to the FBI’s Most Wanted Terrorists list in 2017. A $5 million State Department reward for her capture and conviction was announced in 2018. 
• Legislation enacted in 2019 empowers the US to impose a foreign aid sanction on any country failing to abide by its treaty obligation to the US, a measure likely directed at Jordan.

June 2001 - the last family celebration we ever had
with Malki present

None of the steps that could be taken to right this moral wrong has been taken.

It is demoralizing to realize that politicians, religious leaders, community figureheads and journalists across the board just don't care about seeking justice when doing so is unlikely to win them kudos.

Of course, we nevertheless intend to continue this fight. 

On this birthday, we cannot embrace Malki or the family we dreamed she would be blessed with by now. We can only write the next email or make the next phone call with the prayer that it will hasten Tamimi's long awaited extradition.

Finally: Fycompa

First Fycompa

Nearly two months after our tele-visit with Haya's new neurologist, we have, at long last, begun to administer the new anti-epileptic that he prescribed. The bureaucracy confronting us before acquiring it was daunting and, for the most part our health fund (HMO) gets the credit for that. 

We have given Haya two doses thus far and are holding our breath as we wait the six weeks to reach therapeutic levels. 

But we have already dropped one of her other meds - Vimpat - from 150 mg. to 100 mg. The aim is to eliminate that one. I have never observed any benefit from it; only gave it due to pressure from another neurologist and will be pleased to have it in our rear view mirror. 

And here's another "finally": a response from one dignitary who visited Aleh. 

Predictably, it was disappointing and wishy washy. To wit:

"I agree with you that every child deserves the best care possible. Ideally this would be provided at home by the people closest to the child like you describe. Yet, I have visited ALEH’s facility in Jerusalem and learned that many of the children ALEH cares for have severe and very complex medical conditions, where such quality care in a home-environment is sometimes very difficult or almost impossible to realize. I have met very committed and professional caretakers and loving families."

Stay tuned for my response to him.

Aleh vs ADI

Here's my update re the slugfest underway at Aleh. And my bet is it's the only update you'll get!

Neither side is clarifying what is going on or why. For now, I can only add that Doron Almog and his cronies have staked out the Aleh branches in the Negev and Jerusalem as well as the "Neuro Orthopedic Rehabilitative Hospital" alongside Aleh Negev which is slated for completion in 2021. 

He posts his PR material on a Facebook page under the name ADI - Advancement of People with Disabilities and Rehabilitation for All. From there he links to a new website: ADI-Israel.org 

Rabbi Marmorstein, his apparent adversary, has staked out Aleh Bnei Brak and Aleh Gedera. As he states here https://aleh.org/branches/

"The rehabilitative village in the Negev (“Nahalat Eran”) and the residential center in Jerusalem are no longer part of the ALEH network and have join forces under a new organization named ‘ADI.’ For more information about ADI Negev-Nahalat Eran and ADI Jerusalem, please use the following contact information [followed by a list of phone numbers in Israel, USA, Canada and UK]

On his Hebrew Facebook page, Marmorstein also claims to have opened a "new campus" which, he boasts, was recently visited by a couple of dignitaries from Ariel University. Here is my English translation of his report of that tour. There is no official translation anywhere of that since Aleh no longer seems to have an English language Facebook page:

"The CEO of Ariel University, Mr. Yoram Shai and our dear friend, Yehudah Drasinover, the Internal Controller of the University visited the new campus of the "Aleh" chain, In the course of the tour they saw up close the devoted care and huge investment in the dear children.
Yoram Shai said on the tour that the registered patent of Aleh is the professionalism and the faith in the special child. 
From Aleh comes the call to the entire world to do everything to improve the quality of life of everyone who is dependent on others 
Rabbi Yehuda Marmorstein told them that this is an emotional day for him and the beginning of cooperation between the "Aleh" chain and Ariel University."

The post elicited one comment from someone who asked: "Where is this new campus located?"

No response from Aleh.

However today Aleh's Facebook page mentions some "emotional installation" created by resident children which is situated "at the entrance to the new Aleh campus in Bnei Brak". No further details were provided.

The above report did not appear anywhere in English. That's because there no longer is an English Aleh Facebook page. It was removed last week when Doron Almog announced that he was taking over two of the Aleh branches - Aleh Negev and Aleh Jerusalem - and renaming them ADI - Advancement of People with Disabilities and Rehabilitation for All

Shortly afterwards an English language Facebook page under that name was posted: https://www.facebook.com/adiisraelrehab/

There he offers a long winded version of the split, his own accomplishments and a fantasmical summary of his institution's accomplishments replete with catch phrases like "multiple disabilities and complex medical issues", "fully inclusive", "to reach their fullest potential", and all the usual Aleh jargon.

I fear that this slug-fest may evolve into a tug of war over residents. Each camp may resort to more aggressive "recruitment" tactics to enlarge its number of residents and government funding. Marmorstein has been known to to call at least one parent urging him to hand over his child - that was related on an Aleh PR video clip!

Back at home, we have finally hooked up with a circle of SCN2A families In Israel. 

I had been hunting for just this sort of support ever since we received the news of Haya's genetic mutation in August, 2019. I found them via the global support group about which I've written in the past.

We are six families scattered around Israel and I've already exchanged a flurry of Whatsapps with them in the 24 hours since joining. We plan to have a Zoom gathering tomorrow night. 

Their children are all much younger than Haya and I hope when they hear how profoundly disabled she is they won't be horrified. I'll try to reassure them with the knowledge that medicine is better equipped today to treat our children's symptoms than it was 24 years ago when our nightmare with Haya began.

Anybody interested in joining can contact me at frimet.roth@gmail.com. for details.

An open letter to Jason Greenblatt

Arafat and Erekat [Image Source]

Mr. Greenblatt, as you are undoubtedly aware, my husband Arnold and I have been fighting for justice since 2012 for our murdered child Malki. 

On the 27th of this month she would have celebrated her 35th birthday. Instead we plan to visit her grave on that day. 

Hamas operative Ahlam Tamimi murdered her along with seven other Jewish babies and children and eight men and women in the 2001 Jerusalem Sbarro bombing.

Tamimi, released by prime minister Netanyahu in the Shalit Deal, is now a fugitive from the US Department of Justice which has demanded her extradition by Jordan. She is one of the FBI's Most Wanted Terrorists with a five million dollar reward on her head.

Between 2017 and 2019, in your capacity as President Trump's Special Envoy to the Middle East, you were well positioned to assist us in our struggle. You could have exerted additional pressure on King Abdullah II to abide by the extradition treaty his father and the US signed in 1995. Jordan has been flouting its legal obligations under that valid agreement since 2017.

You were apparently busy with other more pressing matters and never so much as tweeted a word in our direction. But somehow, astoundingly, you found it worthwhile to respond to Tamimi herself [here].

And today, you found time to tweet only hours after the announcement of Saeb Erekat's death. You conveyed "deep condolences" to his family, wished them "comfort and strength" and praised the deceased for having "tried hard to represent his people".

In truth, as you surely know, Erekat was a vile defender of Hamas and a champion of the rights of Palestinian terrorists incarcerated in Israeli prisons. 

On April 6, 2014, the official Palestinian Authority newspaper Al-Hayat Al-Jadida quoted Erekat saying:

"I am telling everyone, on behalf of President Mahmoud Abbas and the [PLO] Executive Committee, that Hamas is a Palestinian movement which never was and never will be a terrorist movement." 

On October 19, 2016 in the same paper, he urged these sentiments:

“Our brave prisoners, who gave and sacrificed their freedom for Palestine and its freedom, are worthy of aid, support and constant activity by us in order to release them and put an end to their suffering.” 

According to the quote, translated by Palestinian Media Watch, Erekat added that the Palestinian people “bow our heads in admiration and honor of the prisoners’ sacrifices, for their acts of heroism, and for their ongoing battle with the occupation.”

Mr. Greenblatt, you are a disappointment to your people and should be ashamed of yourself. Sadly, I no longer expect that of you.

Unexplained upheaval at Aleh?

Haya

Knesset member Yuli Edelstein, our current Minister of Health, was the lucky recipient of an email last week. A critical one - from yours truly. 

He was the latest VIP to have trotted over to an Aleh branch to praise the leading chain of large, closed institutions in Israel.

Predictably, in his quoted address there, Edelstein failed to mention Aleh's central endeavor: the removal of babies, children and young adults from their families to be isolated in its four institutions housing a total of nearly 800 residents.

In so doing he joins a long list of celebrities who have done the same, to whom I have written and who have chosen to ignore my questions.

Another of those, the Dutch ambassador to Israel, Hans Docter, will address an Aleh virtual conference on Wednesday, November 11. I wrote to him about that gig a week ago and confirmed by phone that he received my email. To date, I have, predictably, received no response.

Remember: Ambassador Dokter is honoring an enterprise of the kind [link] that has been phased out and maligned in his home country...

There, as in the rest of the Western world, children with disabilities are deemed deserving of the warmth and love of their own or adoptive families. Why are Israeli children with disabilities any less worthy of that basic right?!

Alongside the constant parade of visiting dignitaries - Jerusalem's mayor included, but I haven't written to him - Aleh has apparently experienced significant changes, perhaps (I don't know) an upheaval. 

Only hours ago, a friend of mine who is on their mailing list, received the following email from Doron Almog, founder of Aleh Negev:

"I wanted to share some exciting news with you. After many years of partnership with the ALEH organization, we will be moving forward under the name ‘ADI.’ We are so grateful to ALEH and its Founder and Director General Yehuda Marmorstein for many good years of collaboration on behalf of the weakest members of society. Doron Almog will be leading ADI as Chairman of the organization, Avi Wortzman as CEO of ADI Negev-Nahalat Eran and Shlomit Grayevsky as CEO of ADI Jerusalem."

At the time of this writing only the English language Facebook page of Aleh has been renamed as ADI. The Hebrew language page remains entitled "Aleh". No formal announcement of the changes has been made, as far as I can tell, other than Almog's circular to Aleh donors.

Here's hoping that the changes will somehow benefit the most vulnerable of our citizens and grant them their long overdue freedom and equality. Somehow, though, I fear that these changes only signal deeper entrenchment of institutionalization in this, sadly backward, state.

The photo I posted above is of Haya looking IMHO utterly normal. It's her favorite sleeping position and I enjoy seeing her this way.

Other good news: We have received our Health Fund's authorization for that new anti-epileptic, Fycompa. Our pharmacy will now order some for us. 

Since we must increase the dose very gradually it will be about a month before we can assess its efficacy for Haya. But count me as "unrealistically but extremely optimistic".

To quote Diana Ross: I'm still waiting

The Diana Ross song is here

Waiting, waiting and waiting some more. Aside from the US presidential election results, we're doing a heck of a lot of other waiting.

1. While she suffers from daily, debilitating seizures, we're waiting to get that new med, Fycompa (generic name: perampanel), for Haya. The neurologist mistakenly sent us on the 29 Gimel track for authorization. It turns out he isn't familiar with the workings of Israel's health funds so he's not to blame. I've been speaking to both our pediatrician - who must write us the script - and the secretary at the health fund office in order to get this process on the right track. For now, the ball isn't even rolling yet. And authorization remains a dream. 
2. I am also still awaiting a response from the Ministry of Welfare regarding the residents of institutions under its supervision. Specifically, what I want to know is in which institutions the victims of Covid-19 lived when they fell ill. Under the Freedom of Information Act, the public is entitled to that. It even has a name: segmentation. I was only given general numbers by the Ministry back in July. To date, the Ministry has only responded to extend its time limit. I've learned that it is entitled do that three times to reach a maximum of 120 days At that point I can proceed to the government ombudsman.
3. Waiting is ongoing for a response from the Ambassador of the Netherlands to Israel who is scheduled to speak at an Aleh event next week. Why would an ambassador from a country where family care is the accepted policy for its children with disabilities promote the removal of children from families in Israel!? I will share his response as soon as it arrives here.

But at least we're not waiting for magnificent hydro sessions for Haya. This week, due to some malfunction, the pool we rent for her therapy was heated to 34 degrees Celsius. That meant we were able to dispense with her wetsuit, allowing for greater freedom of movement. 

Here she is, relaxed and floating skillfully even without the added buoyancy of the wetsuit.

Good job, Haya!

Beware what you boast about

In its November 2020 edition, The Lancet Child and Adolescent Health includes a letter [here] signed by six disability activists from several leading NGOs: The Validity Foundation, European Network on Independent Living, Disability Rights International, the International Federation for Spina Bifida and Hydrocephalus, and the International Disability Alliance. All advocate for the rights of people with disabilities. 

Their letter is entitled "Institutionalisation and deinstitutionalisation of children". 

They were responding to an article in a previous edition which had justified "placing children in group homes for so-called short -term placement 'with the objective of child reintegration' and if 'reintegration is not possible or in the child's best interests.'" 

The letter continued:

"...The authors' rationales for placing children in group homes are deeply problematic. Once children are in group homes, temporary placement tends to become permanent, especially for children with disabilities in countries that do not invest in supporting families. The Lancet's own scientific findings on the harm caused by institutions (including small group homes) refute the possibility that such placement can ever be in the child's best interest. Anything less than the right to family life for children with disabilities is discrimination under the UN Convention on the Rights of Persons with Disabilities. The CRPD Committee has said that the core of the right to independent living for children is the right to grow up in a family and 'large or small group homes are especially dangerous for children.'"

Within days of reading the above I watched a video clip posted by Aleh's indefatigable PR people showcasing the skills of a child who resides in a large Aleh institution - not a small group home.

She appears to function on quite a high level both physically and cognitively and Aleh was patting itself on the back for her achievements. 

Haya and her new ear-rings

But the PR folks were contradicting themselves. On their website, they remind donors, ad nauseum, that Aleh residents "have complex disabilities and require intensive support to perform daily activities."

The child in this clip patently does not fit in that category. 

So, why, for heaven's sake, is she locked up in an institution? And why are the anti-institutionalization arguments posed in that Lancet letter absent from any discourse in Israel about the care of people with disabilities? 

The cogent case for deinstitutionalization must finally penetrate the Israeli psyche, its government and its politics. Its embrace by our society is beyond overdue. Its deadline: yesterday!

Here is our Haya modeling her new pair of earrings purchased on line this week from an Israeli shop, closed due to Corona but delivers its items to your door in record time! 

My Monday

My Monday was largely devoted this week to my daughter Haya and her disabilities.

First was a morning tele-visit with her newest neurologist. We had consulted him a couple of times some fifteen years ago but haven't had contact since. Now we have returned to him primarily because of his expertise in medicinal cannabis. He joins our list of the 20 or so neurologists already consulted for Haya throughout her life. 

But the upshot of Monday's consult with him was to leave our cannabis dose as-is and weigh other treatment changes. Our quest for the elusive epilepsy control continues.

These are the three options the doctor served up:

• Replace Vimpat with a new drug, Fycompa (generic name: perampanel)
• Give the Ketogenic Diet a second shot. We tried it for about 10 months when Haya was about four years old and failed
• VNS surgery which would involve removal of the old one implanted in 1999 and non-functional for most years since then, and implantation of a new, improved version.

We intend to first try Fycompa which has the least hope of success given the many drug failures that Haya has already chalked up. So we've already submitted the requisite Form 29 Gimel to our health fund to receive authorization of "private importation of a drug that isn't registered in Israel". 

It was approved by the FDA in October 2012 but somehow remains in that category in Israel. 

Simultaneously, we'll pursue the Ketogenic Diet and the VNS surgery, both of which will take a while to arrange. Both offer more hope than medications.

The second event yesterday involving Haya was a Zoom session with a half dozen other parents of children who have the SCN2 mutation. It was organized by Dr. Anne Berg who is researching treatments for SCN2A patients. She wanted to speak to parents in advance of upcoming clinical drug trials. 

At Aleh during Sukkot, extremely vulnerable but maskless children

It was interesting to hear from parents around the globe, and I mean that literally: a father in India, a mother in Dubai (she actually splits her time between Dubai and Spain), and mothers from various States in the US including Pennsylvania.

Here is some background info about our group which has 670 members. The mother speaking on this clip, Leah Schust Myers (in the screenshot at the top of this post), is the one who organized yesterday's Zoom encounter:

And while the devotion and determination of the SCN2A parents I met was impressive, the ongoing institutionalization of Israel's children with disabilities is very UNimpressive. 

Our Ministry of Welfare remains mum about where the victims of Covid-19 with disabilities residing in their institutions lived, although their deadline to answer me under the Freedom of Information Act passed four days ago. They've now had over two months to provide me - and by that I mean "the public" - with that easily attainable information.

And here [Facebook link] is Aleh broadcasting to the public how very high risk its residents are for becoming seriously ill with Covid-19. 

They've posted this on their Facebook page:

Uzi and the oxygen balloons at Aleh

"Here in Aleh:
There's a program for life-saving respiratory therapy. Most Aleh residents suffer from respiratory compllications, breathing difficulties which often cause pneumonia and hospitalization.
Consequently, the respiratory therapy program of Aleh offers respiratory therapy personally adapted to the residents. The therapy includes the use of equipment and sophisticated devices that clear the lungs and intensify breathing. 
Breathing activation several times a day is incorporated into all daily activities. This photo shows Uzi bringing more oxygen balloons for reinforcement at Aleh."

And that's Aleh's Uzi and the oxygen balloons in the photo above.

Nevertheless, Aleh's high risk residents continue to be housed and placed in close contact to one another and without masks. See the photo above from their Facebook page showing extremely vulnerable - but maskless - children seated close together under a large umbrella being waved by the attendants, "celebrating" Sukkot.

Why???

The king's quandary

The news on BBC Arabic devoted more than six minutes
on its October 8, 2020 bulletin to an extraordinarily sympathetic
re-telling of Tamimi's encounter with a Jordanian radio talk-show

The mystery surrounding the deportation of Ahlam Tamimi's husband, Nizar Tamimi, by the Jordanian authorities, remains unsolved.

It was a puzzling move which only made some sense as a tactic to lure Ahlam Tamimi out of Jordan.

She seems to have quickly morphed into a political hot potato in light of the US's intensified pressure on Jordan to extradite her. 

The speculation in the Arabic media has been that newly-appointed US Ambassador to Jordan Henry Wooster was flexing some muscle and threatening heavy monetary sanctions on Jordan for defying the demand of the US Department of Justice for Tamimi's extradition.

Hence, apparently, Nizar's deportation on October 1, 2020 to Qatar.

But since then Jordan's regime appears to have been paralyzed. Last week, a very public display of disdain for Tamimi on the Jordanian talk-radio program "We and You" galvanized public support for her "plight" on social media ["Report: Jordan deported Sbarro terrorist mastermind's husband to force her out", i24News.tv, October 2, 2020]

The host of that popular call-in radio program, who was video-taped mid-conversation signaling for caller Ahlam Tamimi to be disconnected, cited technical difficulties as the cause for the move. But he has now resigned and his show has been suspended indicating that was a fabrication.

Tamimi's fans who adore her for murdering fifteen innocent Jewish men, women and children (8 children!) are irate. The hashtags #WeAreAhlamTamimi and #AhlamTamimiYourVoiceIsHigh were near the top of Jordan's social-media trending lists.

 
Even BBC Arabic invited this monster to be interviewed - minus the "technical difficulties". 

Not once since the Sbarro massacre has the BBC deigned to cover the story. Only now, when Tamimi is pleading for pity, did it do so. And without the slightest reference to the massacre and its victims.

King Abdullah II is clearly caught between a rock and a hard place. Who can he afford to confront: his bloodthirsty constituents or his benefactor, the US?

While he mulls that choice, we sit with bated breath, hoping these latest developments will bring us the justice for which we have long pined.

This mass-murderer begs for your pity

Wanted and dangerous | The US Department of Justice
unsealed an arrest order and an extradition request in 2017

Poor Ahlam Tamimi. 

Her husband has been deported ["04-Oct-20: The Sbarro bomber's husband has been forced to leave Jordan: A snapshot of developments"] to Qatar from Jordan, the country which had afforded the couple refuge and freedom for the past eight years. 

Or as Tamimi wrote in her plea to Jordan's King Abdullah II: 

"Jordan has embraced me and was a safe haven for me and my husband Nizar Tamimi after we were released from the prisons of the Israeli occupation. We lived the most beautiful days of our lives among the Jordanians in Jordan for nearly eight years."

Now, in the wake of that deportation, Tamimi is angling for sympathy. She bemoans the fact that the deportation has resulted in "separating us from each other so that we are disunited and returned to the pain of separation again."

That's right. She'd like the public to pity her, the woman who has never ceased gloating about the eight children and seven men and women whom she slaughtered in 2001.

 
And here is that blood-thirsty monster, one of the FBI's Most Wanted Terrorists (there are 28 of them in total) turning on the self-pity full blast in an interview with Al Quds, the news site of Hamas-affiliated Quds News Network 

"With the deportation of Nizar from Jordan, memories of the engagement period that was in Israeli prisons came back to us. The pain of separation returned, the pain of distancing and suffering."

We can only guess what Jordan's puzzling deportation of Nizar Tamimi portends and hope that it means true justice is on the horizon. But for now, we can only take comfort in the fact that our precious Malki's murderer is apparently not happy.

Israel's Ministry of Welfare is still concealing information

The ministry's Jerusalem head office [Image Source]

Here in Israel, we are still anxiously awaiting a significant drop in the upsurge of Covid-19 infections, to enable an easing of our restrictions. And to think, just a few months ago we led the world with our low Covid-19 stats.

In the meantime, the wall of silence I have hit remains intact [see "Freedom of information"]. There is no sign that our government will enlighten us about our Covid-19 victims with disabilities any time soon. 

The Ministry of Welfare (משרד העבודה הרווחה והשירותים החברתיים to give them their full and current name - translates to Ministry of Labor, Welfare and Social Services which no one ever calls them) was legally obligated to provide us with the information we seek by October 10th, under the Freedom of Information Act.

But it's a safe bet that the "check isn't even in the mail".

So we remain in the dark about "segmentation", to use the Ministry's favored term... meaning we still don't know the names of the institutions in which those victims were locked.

Not only is the public entitled to that information, for many parents of children with disabilities it is crucial.

As this pandemic stretches on, many parents are left in a quandary. Should they keep their children at home or relinquish them to institutions, as our government urges us all to do? Should they struggle to provide their children with the specialized care and therapies they need or hand them over to government subsidized, large, closed institutions where such amenities are purportedly provided?

Before Covid-19 struck, professionals the world over maligned those institutions for robbing children of the love, attention, constancy and emotional stability that every child deserves and needs. But now, in the Covid-19 era, it could well be that removing a child from his family will actually endanger his very life. 

Bear in mind that most of them are at high risk for being severely ill with the virus. It has been proven that those with neurological impairment or genetic mutations are in the high risk category.

Life in a large, closed facility with rotating care-givers is obviously not the ideal setting for avoiding Covid-19 infection.

Once the holiday season is over and this strict lockdown is eased, I hope that the Ministry of Welfare will fulfill its obligations to release the information it has been concealing for so many months.

The nightmare of dreaming about Malki

Tamimi

For many years after her murder, I rarely dreamed about Malki. 

But lately I do so more often. In the dreams, she returns to us and we welcome her, overjoyed and unquestioning, The gnawing realization that she will re-depart imminently somehow doesn't ruin the reunion. 

We hug her, kiss her, chat and laugh as if tragedy never befell us.

Waking up after those dreams is almost as devastating as it was to first learn of her death.

Facebook ought to be reminded of the heartbreak that the families of the Sbarro victims still endure. That's because, inexplicably, Facebook has been actively disseminating the incitement spewed by Malki's murderer, Ahlam Tamimi.

Her words encouraging terrorist murder were posted [video] to mark the anniversary of the 9/11 tragedies. The Facebook page affording her that platform [link] has remained untouched until now despite our exhortations to Facebook management to remove it.

Tamimi devotes most of her post to bemoaning the diminished status of Palestinian prisoners i,e. terrorist murderers.

She relates that in the past the release of prisoners from their Israeli jail cells would have triggered meaningful festivities. Today all that happens is a few family members come and greet the prisoner at the nearest Israeli checkpoint. No ceremonies, no community involvement.

My daughter Malki הי"ד

Another sign of those murderers' fall from grace, she says, is that families are more reluctant for their daughters to marry released prisoners.

Tamimi sees this decline in ardor and prestige as influencing the media as well. If the public no longer care as much about the prisoner issue, she asserts, the media see less need to give it coverage.

It's not difficult to discern a touch of self pity here. Tamimi may be yearning for the days when she was welcomed by crowds of adoring fans, awarded prizes and named by the students of Jordan Media Institute, a school of journalism, as their "success model".

But, unfortunately for us, the most important recognition for Tamimi - that of Jordan's King Abdullah II - remains unaltered. He persists in defying the US Department of Justice's request for her extradition. He steadfastly denies the validity of the Treaty of Extradition signed by Jordan and the US in 1995, a treaty officially recognized as valid by the US State Department.

Despite Abdullah's brazen defiance of the US, he continues to enjoy the verbal and financial support of the US government and the unabashed adulation of a long list of Congressmen.

Presumably, Facebook has observed that attitude and has consequently been complacent about Tamimi's use of its platform to encourage terror.

With the Jewish Day of Judgment behind us and Yom Kippur, the Day of Atonement, nearly upon us, let's remember this unrepentant mass murderer who deserves no forgiveness - only cold, hard justice. Justice that she has escaped since 2011 when she was freed from Israeli prison and returned to her homeland and family. 

Justice that has eluded her victims' loved ones despite our relentless efforts to galvanize the public.