How do I love thee?

Jordan, this past Sunday: American officials transfer $745M
to the kingdom

How do I love thee? Let me count the ways:

1. Adulation: As in the Washington Institute's Scholar-Statesman's Award bestowed on Jordan's King Abdullah II in November 2019 [link]
2. Friendship: As in (by my count) 35 meetings since March 2017 with various U.S. dignitaries - in the White House, Capitol Hill and in the King's Jordanian Palace.
3. Preferential treatment: As in ignoring the King's intransigent refusal to extradite mass murderer Ahlam Tamimi despite a valid extradition treaty with the U.S., despite the 2013 US indictment against her, despite the US Department of Justice demanding her extradition
4. Cash Handouts: As in Sunday's $745 million transfer to the kingdom by the United States.

And thus the incomprehensible love-fest between US power brokers and Jordan's king/dictator Abdullah II endures.

Mad about His Majesty

Jordan's king and Washington Institute's Satloff [Source]

[A version of this article appeared in Times of Israel on December 12, 2019]

Along with the other concerned and curious around the world, I've been tuning in frequently to the impeachment hearings.

Many speakers have mentioned rule-by-monarchy as the bogey man looming large. "The United States Constitution is anti-monarchical" is an oft-repeated mantra.

So it was with shock and alarm that I listened to last week's conversation between the Jordanian dictator King Abdullah II and the Washington Institute for Near East Policy's executive director Dr. Robert Satloff, an expert on Arab and Islamic politics as well as on Jordan and on U.S. Middle East policy.

The exchange was video-recorded [here] before an audience, immediately after that esteemed think tank awarded Abdullah its highest honor, the 2019 Scholar-Statesman Award.

Dr. Satloff's admiration for his Jordanian friend was evident throughout. He dubbed it "our very special conversation", never addressing the King without appending "Your Majesty".

He sought advice from him on the most pressing issues challenging world leaders, including ISIS:

"How would you describe the challenge of radicalism and extremism in this era today to Jordan specifically and more generally?"

But what truly blew me away was when Dr. Satloff focused on the Arab Spring and on the current protests gripping the Arab World. First, he invited Abdullah's take on the phenomenon. Abdullah suggested two possible explanations:

"The leaders don't understand, or regional politics is being played by Arab and non-Arab actors."

Satloff responded to that with this shocker:

"One thing you can say looking at both waves. The monarchies seem to have avoided this. Jordan, Saudi Arabia, Morocco. What's the secret recipe?"

The King:

"I think you should answer that." [Laughter]

Abdullah then proceeds:

"Monarchies in the way I was brought up by his late Majesty [King Hussein] and he was brought up by his father and his father is: We're there for all of society. You know, we are fortunately or unfortunately, in many parts of the third world, tribally-based. When you have a small monarchy like we have in Jordan and like you have in Morocco, we're the balance therefore for everyone in society, whether you're Muslim or Christian or Jewish. Whether you're tribal or you're a farmer. We are the ones that make sure that everybody is protected and everybody is supported. And I think that's what's helped the monarchies be stable, doing a very difficult task for our region."

Satloff accepts that and proceeds to plug the King's recently published book.

Tamimi expresses appreciation to Jordan's king, March 2017

Now add to this the fact that the royal object of Dr. Sattloff's fulsome fawning has been defying a U.S. demand for extradition of one its most wanted terrorists for the past six years, Ahlam Tamimi. 

And the fact that there is a signed, sealed and perfectly valid extradition treaty between Jordan and the U.S. (though Jordan now says it’s invalid) - and the above exchange becomes positively mind-boggling.

Yes, the very man whom Dr. Sattloff adores is shielding a confessed mass murderer from facing trial in a U.S. Federal court. Three of her sixteen victims were U.S. citizens. One was my precious child, Malki.

In a widely-viewed video clip, Tamimi smiles on being told that the bomb she set had killed more children – eight – than she had presumed. This is the evil that King Abdullah II of Jordan enables to evade justice.

Low expectations are the key

As I  mentioned [here], November was Epilepsy Awareness Month.

But nothing can be as stark a reminder of the tragedy of epilepsy as a death that results from it. Because while most people are aware that epilepsy is a debilitating ailment, and that the treatments available have many serious side effects, few view it as lethal. Even those of us whose loved ones suffer from it.

So the horrific death this week of a beautiful, vibrant Jerusalem teenager after an epileptic fit landed her under the light rail ["Jerusalem light rail strikes, kills 19-year-old woman"] warrants publicizing.

Haya, of course, is not in any danger of dying from her epilepsy in a similar manner. She never even stands independently. But SUDEP is a constant threat.

In the meantime, we struggle to reap the most minor achievements from her through therapies.

Occasionally, thanks to our rock bottom expectations, we find cause for celebration. Here she is in the video clip above impressing us all during her Occupational Therapy session this past week.

What gives with all this king worship?

New York City, November 21, 2019: The Washington Institute disturbingly
bestows an award on Jordan's king [Image Source: The king's own website]

Here I was, convinced that one of the basic tenets of American democracy is the rejection of monarchic rule. But it seems I erred.

These days, the Jordanian ruler, King Abdullah II, enjoys the fulsome adulation and praise one would expect for a selfless hero who has rescued a dozen children from a blazing building. 

He is feted repeatedly at the White House. Bi-partisan delegations from the US Congress fly to his Amman palace to honor him. Leaders of major Jewish organizations attend his conferences and breakfasts. Numerous international media outlets extol his virtue and wisdom. 

And last week, the esteemed US think tank the Washington Institute for Near Policy handed him its Scholar Statesman Award.

All of this, in itself, is puzzling. 

But what makes it infuriating is that the recipient of that adulation is a dictator - yes, that's what an unelected ruler is, king or not - who has defied the U.S. Department of Justice. 

He refuses to extradite one of the FBI's Most Wanted terrorists. 

He denies the validity of a treaty of extradition signed and ratified by his father, King Hussein, with the US - a treaty which the US State Department says unequivocally is in force.

Add to that mix the fact that the terrorist whom Abdullah is embracing is the mass murderer and Hamas operative, Ahlam Tamimi, who has boasted numerous times of her evil "achievement" to her admirers on TV broadcasts. 

The terror bombing she orchestrated slaughtered sixteen innocents, including eight  children. One of those, my precious Malki, was 15 years old when this monster took her from us. Malki was a citizen of the United States.

What we have here is a travesty of justice of the first order. 

Nevertheless, last week three of Israel's major news services - Haaretz, Times of Israel and Jerusalem Post - chose to report that award bestowed with great pomp and ceremony by the Washington Institute with not even a whisper about Abdullah's inexcusable conduct.

Instead, all three of them mindlessly followed the lead of all the other King Abdullah worshippers. The Times of Israel did so despite having published our op-ed just one day earlier [see "A tribute unfit for a king who harbors our child’s killer"] .

My husband and I, for whom Malki's murder remains the source of deep pain, are utterly baffled by this sweeping acceptance of King Abdullah's terror-abetting conduct.

But we will never cease our struggle to arouse national leaders and news industry magnates. After all, like every other murder victim, Malki deserves justice.

Who knew?

So here I am immersed in researching and coping with Haya's epilepsy but oblivious to an important epilepsy detail: November is Epilepsy Awareness Month!

I just learned that on a visit to the Facebook page of The Families SCN2A Foundation. The page also noted that one-third of all epileptics have refractory seizures.

But while that means that in one sense Haya has plenty of "friends" in the same boat, she is still in a distinct minority.

In 2018, there were only

276 known SCN2A cases identified to date (see Table S1 in the Supplemental Information online)... At present, the number of known SCN2A cases is roughly
equal between IEE [Infantile Epileptic Encephalopathy] and ASD/ID [Autism Spectrum Disorder/Intellectual Disability], likely reflecting differences in the adoption of genetic testing.

[Source: "Progress in Understanding and Treating SCN2A-Mediated Disorders", online here]

Has The Washington Institute lost its moral compass?

Source: Washington Institute website

It was difficult not to choke upon reading the announcement of this year's Washington Institute honoree ["17-Nov-19: Jordan's king to be honored for profound commitment to peace and moderation"]

Joining a list of truly distinguished and deserving past recipients of its Statesman-Scholar Award is a dictator and terror-abettor. A man who has given refuge to Ahlam Tamimi, confessed murderer of my precious daughter Malki, and of seven other children and eight adults.

The members of the esteemed Institute have selected as its 2019 recipient a man who has steadfastly refused to extradite Tamimi to stand trial in the US. Two of her victims, including Malki, were Americans. 

In doing so, King Abdullah is defying a 2013 indictment and demand for extradition by the US Department of Justice ["13-Nov-19: Thank you, Mr Foreign Minister"].

As the US State Department reiterated incontrovertably earlier this month in an annual report ["03-Nov-19: In Washington, a step towards bringing the Sbarro bomber to justice"], the US recognizes as valid and binding the extradititon treaty signed and ratified with Jordan in 1995. 

Jordan has in the past extradited several of its citizens to the US in accordance with that treaty. 

But now, Jordan - which as we know is an absolute monarchy - has declared that treaty void ["23-Mar-17: Looking for justice in Jordan, Jerusalem and Washington"]. That's a convenient excuse for protecting this evil woman who has boasted of her "achievement" repeatedly on TV. 

But we are not obliged to buy that excuse. In fact, as moral, rational humans, we are obliged to fight it because it is nothing short of a brazen travesty of justice.

Yet instead the moral, rational humans at the Washington Institute are rewarding that travesty and lauding the king for his "profound commitment to peace and moderation" and for opposing his region's "violence and extremism".

On the right, Malki at the center of my family at a celebration
just weeks before her life was stolen from us by the woman in the
State Department reward poster on the left

I would presume that masterminding a terror bombing in Jerusalem's Sbarro pizzeria when it is filled with mothers and children on a summer's afternoon qualifies as "extremism". And I also presume that refusing to allow the trial of that mastermind would not qualify as a "profound commitment to peace and moderation."

Which leaves me curious as to what rationalization the esteemed members of this institute can offer me for the infuriating decision to "celebrate as outstanding leader" this opponent of the most basic tenets of justice and morality.

My child was a kind, loving, generous talented girl who volunteered with children with disabilitites, played the classical flute, sang beautifully and was a loving daughter. She deserves for her murderer to be behind bars. Nothing more, nothing less.

A "fail" for Phenytoin

Haya and me walking in the kitchen seven days
after we stopped the Phenytoin

One week after starting her on 100mg/day of Phenytoin [background here], Haya had a couple of horrific days, seizing terribly and for hours on end. Nothing I gave her stopped them.

On the second horrific day, after five hours of that hell I wrote her new neurologist about it. But even before her response, I just stopped administering it.

 
She emailed us, agreeing that in rare cases this drug can exacerbate instead of improving the situation. 

I pointed out to her that on the day of five hours worth of convulsing, Haya also had a bloody nose and her menstrual period. Now, she never gets the former, and hasn't had the latter in about a decade. The neurologist attributed the bloody nose to our dry weaather. I doubt that; we often have dry weather but, as I noted, never a bloody nose. The menstruation stumped her. 

Well, the nose dried up quickly. The period, though light, is still ongoing. All very strange.

 
So we're back to square one with medications. 

The neurologist hasn't suggested any others to experiment with. I hope she won't jump to the second option she mentioned after medications: the Ketogenic Diet. I haven't got the stamina for that anymore. 

I was some twenty years younger the last time we attempted it. We persevered then for 10 months and only ditched it when Haya began vomitting several times a day from the high fat content. 

The neurologist was pretty eager for us to try it when we visited her two months ago. But she seemed even more eager about the Vagal Nerve Stimulator surgery. The idea of surgery leaves me positively cold particularly since a surgeon warned us a couple of years ago that it would be "complicated" in Haya's case. She has had an old, non-functional VNS stuck in her neck since 1999. It is undoubtedly coated with all sorts of tissue by now.

So Haya is back to seizing quite a lot and functioning poorly. It is a bleak situation and her new diagnosis of Epileptic Encephalopathy Early Onset 11 due to an SCN2A de novo mutation only bleakens it more.

The academic articles about her syndrome which we receive thanks to Google Alert make it clear that there is currently no salvation our there for Haya.

This last one, for instance, taught me that her current seizure situation qualifies as Status Epilepticus.

A dream that cries out for justice

My Malki, not long before she was taken from me

Last week my Malki appeared to me in a dream - as she has only done some four times in the past 18 years.

She felt so close and alive. I welcomed her warmly but with deep reservations, sensing that for some unarticulated reason her stay would be limited. But it was a joy to have her in our midst again.

I remarked to her that she probably only had a basic cellphone and assured her I'd get her a smartphone. On the day of the terror bombing in which she perished, I frantically called her phone in vain for many long hours. My husband reassured me that cell phone lines were all down as a result of the ataack; no need for concern.

So it's no wonder I commented about her phone in my dream.

My apparition of Malki told me she was about to leave on a school trip for a while but I urged her to give that a miss and stay home with the family instead.

Then I awoke, sad, bereft, disappointed, cheated afresh - a feeling I can't truly convey since only a bereaved parent would comprehend it.

Nonetheless, I would like to transmit this dream somehow to the three congressional delegations that flew to Jordan in the past month to honor and praise its dictator, King Abdullah II. Each of them praised him fulsomely for, among other achievements, his commitment to fighting terrorism.

None of the US legislators hinted at, let alone expressly referred to, his regime's refusal to comply with the US Department of Justice's 2017 demand for the extradition of one of the FBI's Ten Most Wanted Terrorists, Ahlam Tamimi. 

That mass murderer, a Hamas operative who masterminded the 2001 Jerusalem Sbarro bombing, has enjoyed refuge in Amman since 2011.

Among the eight men and women and eight children Tamimi slaughtered were two Americans, one of them our 15 year old Malki.

The US State Department has just stated unequivocally that the extradition treaty signed by the US and Jordan in 1995 is valid ["03-Nov-19: In Washington, a step towards bringing the Sbarro bomber to justice"]

Jordan's King Abdullah II - via his judiciary - has declared that same treaty null and void.

How many more US congressional delegations will fly to Amman to hand this hypocritical "friend" a free pass for his defiance.

And how many more times will the White House fete him as an honored guest and "partner" in its anti terrorism campaign. It has already done so multiple times.

I urge any Congresspeople or White House officials now contemplating a tete a tete with the terror- abetting Jordanian dictator to remember my child, Malki and the fifteen other victims that Tamimi boasts publicly of murdering.

The United States is the single largest donor of assistance to Jordan [Source: "Jordan: Background and U.S. Relations", Updated October 17, 2018 - Congressional Research Service, at page 13]. 

My suggestion - make King Abdullah this reasonable offer.

Extradite Tamimi in return for continued lavish US financial and political support.

That's an entirely justified quid pro quo!

Calling moms of profoundly disabled kids

As I mentioned, I joined a Facebook page for mother's of children with special needs recently and it's getting my goat.

Most of the posts are either grumbles about their childrens' challenging behavior, or about the bureaucratic hurdles faced in securing every single special service on offer for this population. And they all have some weird aversion to naming their children's "disabilities".

So posts are riddled with acronyms.

Here's a list (in no particular order) for you to test your special needs acronym aptitude:

• FAS
• CAPD
• ASD
• DPNA
• ABA
• ADHD
• DBT therapist
• CBT therapist
• LD
• SN
• ODD
• PTSD
• HFA
• SPD
• DS

Good luck! Responses welcome.

Their world is so alien to me that I'm on the verge of starting a group for parents of the profoundly disabled.

So far I've only come up with this name: Moms of the Profounders.

But I invite your suggestions for a better one.

Next Up: Phenytoin!

Haya's first dose of the new med last night

Very excited to share that Haya will finally try out a new anti epileptic - one that has been found successful in a significant percentage of EIEE11 cases. It's the first med change we're making since her diagnosis with that syndrome three months ago (see "At last - a pretty solid diagnosis")

I loathe giving her three anti-epileptics at once. But as the neurologist emphasized, the cardinal rule is one med change at a time. Once Haya's settled into the therapeutic dose of Phenytoin (also sold as Dilantin and Phenytek), the doctor promises to remove at least one of the others. 

She even asked me whether I thought either of them is effective. I told her I couldn't judge but did remember which was added last, Vimpat (lacosamide), and didn't think it had made a difference. 

The truth is, her other med, Keppra (levetiracetam), isn't anything to write home about either. 

I got the script for Phenytoin yesterday. And the photo above shows Haya getting her very first Phenytoin pill sold here as Epanutin.

When Haya's pediatrician heard that this was the drug selected by the neurologist, he was surprised. "When I was doing my residency, back in prehistoric days", he recalled, "we had only two anti-epileptics to administer: phenobarbitol and phenytoin. There are so many new ones on the market now." 

But those new ones just don't help Haya. Wikipedia says:

Phenytoin was first made in 1908 by the German chemist Heinrich Biltz and found useful for seizures in 1936. It is on the World Health Organization's List of Essential Medicines, the most effective and safe medicines needed in a health system.

Here's hoping that stellar reputation will prove well deserved!

Good-bye to Jason Greenblatt, a not-so-special representative

Ahlam Tamimi

Jason Greenblatt, the outgoing US Special Representative for International Negotiations, praised Israel and Jordan for their peace treaty which is 25 years old this week.

“The efforts of our two allies - Israel and Jordan - to find common ground and work to build a more peaceful and mutually beneficial relationship for their people is important,” tweeted Greenblatt, who is being fondly farewelled these days.

Sorry but I'm going to be a party pooper: Jason Greenblatt doesn't deserve a warm send-off.

First, it is abhorrent for him to refer to Israel and Jordan both as "our two allies" as if they are equally important and loyal to the US. 

Jordan has, for three years, defied the demand of the US Department of Justice to extradite the confessed mass murderer, Hamas operative, Ahlam Tamimi.

Jordan's current regime has declared the extradition treaty which its previous king signed with the US in 1995, to be null and void. The US says it is perfectly valid.

In 2011, Jordan's dictator, a.k.a.King Abdullah II, gave a red carpet welcome to Tamimi, murderer of eight Jewish adults and eight children in the 2001 Jerusalem Sbarro pizzeria bombing. He has since given her refuge and the unfettered freedom to thrive, travel and incite to terrorism.

It is appalling that Greenblatt swept all that under the carpet to commemorate the peace treaty between terror-abetting Jordan and Israel.

Lest anybody doubt that Greenblatt is aware of the above, please note: My husband and I tweeted Greenblatt not once, not twice but numerous times detailing Tamimi's crimes, the DOJ's futile attempts to bring her to justice and Jordan's stalwart refusal to extradite her. 

We shared with him, of course, that our fifteen year old daughter, Malki, perished in that attack.

Greenblatt has never deigned to respond to us in any manner or form.

It is particularly baffling that a man who professes to be G-d- and Torah-fearing would ignore a heartfelt plea for assistance in achieving justice.

Perhaps in his new role, devoid of honorifics, Mr. Greenblatt will see fit to acknowledge us and our fight.

Speaker Pelosi, please rectify this travesty of justice

Our heartache deepened as yet another US Congressional delegation flew to Amman, Jordan, this weekend to meet with and praise the terror-abetting King Abdullah II ["19-Oct-19: House Speaker Pelosi led an official visit today to the chief protector of our child's killer"]

Notwithstanding the demands of the impeachment inquiries, House Speaker Nancy Pelosi found the time to present the Jordanian dictator with the same adulation she lavished on him in March 2019 and then again in April 2019 in Washington DC.

US Speaker of the House Nancy Pelosi and Jordan's King Abdullah
make their way to a podium to deliver statements ahead of a meeting at the US Capitol in Washington, DC on March 13, 2019 (Photo: MANDEL NGAN/AFP/Getty Images [Source]

US leaders on both sides of the aisle persist in ignoring the fact that the object of their friendship steadfastly rejects the US Department of Justice's demand for the extradition of mass murderer, Ahlam Tamimi.

The blood of our daughter, Malki, a US citizen, and of the other 15 victims of Tamimi's terror bombing - of whom two more were Americans - cries out for justice.

The Jordan Times ["King meets with US Congress delegation"] reported Saturday night that yesterday's meeting

"also covered regional and international efforts to counter terrorism within a comprehensive approach. For their part, the US lawmakers commended Jordan’s efforts, led by His Majesty, in pursuit of peace and stability in the region, praising the King’s wisdom."

US media have remained mum about the encounter.

However we can probably trust the accuracy of the Jordanian report given that Ms. Pelosi is on record as stating at their March 2019 meeting:

"It is really a great honor, officially, personally, in every way, to welcome back to the Capitol His Majesty, King Abdullah II. With his leadership, America has a true partner: a partner for peace, a partner for progress."

And she is again on record as telling the King in April 2019:

"I had the privilege as my first act as Speaker - on my first invitation - to extend to a Head of State, to extend to His Majesty to be the first person to address a joint session of Congress when I became Speaker. So I think that says to you how important the relationship between our two countries is - between Jordan and the United States - how important the friendship is - that Members of Congress feel toward His Majesty - and how much we value his words of wisdom."

Is that any way to address a man who welcomed a confessed terrorist murderer with open arms and has, since 2011, given her a platform on TV and social media to incite millions of fans to commit fresh murders?

Instead of flattering him, Ms. Pelosi, use your clout to insist he abide by the extradition treaty his father signed and ratified in 1995.

Tamimi has evaded the rule of law for long enough. You, as a lawmaker, can rectify this travesty of justice.

Deal with the devil

Image Source: Haaretz October 19, 2011

On the eighth anniversary (today - October 18, 2019) of the infamous Shalit Deal, remember its painful and outrageous repercussions.

That deal between Israel and Hamas freed 1,027 (1) terrorists including hundreds of convicted murderers, some of whom promptly resumed their evil ways and murdered yet more Jews.

Releasee Ahlam Tamimi, murderer of eight children (including our precious daughter, Malki) and seven adults - and currently on the run from the FBI and the US Department of Justice - has been brazenly urging her fans to emulate her.

We can only guess how many more innocent children have lost their lives due to her incitement.

On this sad day, help us convince Congress and American Jewish leaders to pressure Tamimi's protector, Jordan's King Abdullah II, to extradite her. 

Defying the request made public two and a half years ago by the US Department of Justice that he do just that - and despite an extradition treaty from 1995 - he continues to provide this confessed terrorist with a safe haven.

Let's see an end to the warm relations everybody fosters with this terror-abetting king until he seats Tamimi on a US-bound plane to face justice.

Welcome to my SCN2A world

From a 2017 overview about the current knowledge
of SCN2A disorders, presented by Dennis Lal
of the Stanley Center for Psychiatric Research at the
Broad Institute of Harvard and MIT [via YouTube]

After a hectic period laden with stressful but (thank G-d) joyous events, I can finally refocus on this blog. 

First, to recap.

We now have a pretty firm diagnosis for Haya's symptoms after a 24 year hunt. 

While it is a de novo mutation of the SCN2A gene i.e. not hereditary (yay!), it has been an otherwise distressing discovery. That's because there is simply no effective treatment for it. 

The mutation causes a particularly severe and refractory epilepsy: Epileptic Encephalopathy Early Onset 11. It's sometimes called Early Infantile Epileptic Encephalopathy Type 11, and sometimes EIEE11.

Available anti-epileptic drugs are almost invariably useless, something we'd already concluded on our own after Haya's 24 years of relentless seizing.

Nonetheless, last month we brought Haya to a pediatric neurologist whom our geneticist had recommended highly. (She's booked up for the next year).

At that visit, she assured us she would study Haya's EEG's and her history and would then suggest medication changes as a first step. True, after the years of the med failures we've had, any new ones have no more than a 3% chance of success - but that isn't zero, as the doctor noted. 

So we all agreed it's the wisest first step.

Next, if we find Haya to be in the 97% majority med-wise, this doctor recommended we re-try the Ketogenic Diet. We had Haya on that diet some twenty years ago with minimal success and dropped it after 10 months because of serious, uncontrollable vomiting. 

 
But, as the doctor noted, we had had no professional guidance in calibrating the diet. So giving it a second shot with good medical intervention this time sounds wise.

If that diet fails again, she recommends going with a second VNS implantation. 

That was also a failure back in 2000 and we were bereft of sound medical guidance then too. So while I'm reluctant to subject Haya to surgery but if there's no alternative, we'll try it.

I also set up a Google Alert for the SCN2A gene and Epileptic Encephalopathy Early Onset 11. Not one of the journal articles I've been sent so far are relevant or helpful. Most weren't even about that gene! Are you listening Dr. Google?

Now a request.

The new neurologist, when I asked her, said she has no other patients with this syndrome. Our Haya, I think, may well enjoy the distinction of being the only such person in Israel.

If you know of anybody afflicted with it, please let me know. I will give you my personal details if requested in a blog comment.

A secret scandal

My murdered daughter Malki z"l

About thirty leaders of prominent American Jewish organizations gathered last week ["29-Sep-19: As we prepare for the High Holy Day season"] to honor a world leader they clearly esteem.

They accepted the royal invitation to join the ruler in a swank New York City hotel. The leader undoubtedly valued their acceptance of his invitation because his tightly-controlled news services all accorded the event significant coverage.

Conversely, the Jewish organizations involved made no mention whatsoever of the event.

The leader involved is Jordan's King Abdullah II, the same dictator who refuses to accede to the US demand for extradition of mass murderer, Ahlam Tamimi.

She is the bloodthirsty terrorist who has boasted of killing my child, Malki, along with 7 other children and a total of 15 innocent Jews. 

You may wonder what possessed those Jewish leaders when they chose to participate in King Abdullah's performance; how they could greet him without mentioning the protection and respect he has lavished on Tamimi for the past eight years.

From an Arab source, the Jews who breakfasted with the king

You may even be outraged, as my husband and I were, when one of those Jewish leaders told us he could not possibly divulge any details about the encounter because it was "off the record".

Obviously his and his colleagues commitments to King Abdullah outweigh any loyalty he owes the Jewish constituents he purports to serve.

On these days of awe when Jews the world over daily recite the prayer "Avinu Malkeinu" ["Our Father, Our King"], it is distressing to learn that the king these Jewish leaders actually revere is none other than the protector of the nefarious Tamimi, Jordan's King Abdullah II.

Institutions: The world goes one way, Israel and Aleh the other

The planned interior of the newly-announced rehab hospital at Aleh Negev

On September 12, 2019, Aleh released a promo of its much-touted rehabilitation hospital: see Times of Israel 

It will be erected beside the largest of its four institutions for people with disabilities, Aleh Negev Nahalat Eran. And it is heavily subsidized by the government of Israel and the Jewish Agency. Naturally, donations are also welcome.

The PR "smoke-in-our-eyes" piece glosses over the institutionalization aspect while homing in on the planned hospital's features.

I noticed two interesting details that I fear will likely be overlooked:

1. In mentioning the institution where some 140 children and young adults are locked away and isolated from society, it refers to them as "villagers". How quaint. Only they are not villagers in any sense of the word. A village is "a part of a world clustered human settlement or community, larger than a hamlet but smaller than a town, with a population ranging from a few hundred to a few thousand." That's Wikipedia speaking.
2. In mentioning "Dr. Itzhak Siev-Ner, head of the Rehabilitation Department at the Health Ministry who is leading the new venture on behalf of the government" it omits that he is also Medical Director, ALEH Negev–Nahalat Eran Rehabilitation Hospital [source]. I'd wager that's a conflict of interest of the first order.

Bizchut protest outside Ministry of Welfare August 2019 in the wake
of the killing of Ephraim Ben Baruch

Below, for some contrast, is my translation of an article circulated by Bizchut activist Naama Lerner after the killing of Ephraim Ben Baruch in a Haifa institution two months ago:

Ephraim Ben Baruch lived for six years in the Ramat Haifa residential facility, intended for people with cognitive developmental disability. Throughout, he complained repeatedly to his family members. "He said it's bad for him, that he is being hit", says his mother, Racheli Ben Baruch. "When I visited the facility in order to complain they showed me photographs of him laughing and eating. That everything was fine. I believed them. I call on parents whose children live in hostels not to be complacent like me. If your child complains, start acting so that you will not face the situation that befell me." 

Ephraim died three weeks ago in the institution he lived in after he was allegedly beaten by his caregiver. 

A tragedy like this, that joins other cases of abuse by counselors and caregivers of their charges, highlights the need for a "house cleaning" (in Hebrew: בדק בית) of everything related to appropriate housing solutions for people with disabilities. 

Only two months ago, a young woman who worked in a hostel in Kfar Saba was accused of attacking a resident of the institution on several occasions. In January, the police arrested two women on suspicion of attacking a 50 year old resident of the hostel in Nahariya where they worked. 

According to 2014 findings, there are some 25,000 people with disabilities living in "out of home" residences (hostels, dormitories and protected residences) in Israel. The overwhelming majority are people with emotional disabilities and with cognitive developmental disabilities; a minority have physical and sensory disabilities.

Some 6,100 people with cognitive developmental disabilities live in 63 dormitories (96.8 residents per institution on average), nine of which are governmental with another small number operated by amutot (not-for-profit associations). The overwhelming majority are institutions owned by private companies that naturally see before their eyes the bottom line.

The Right to Your Own Toothbrush

The above atrocities were committed in institutions against a background of a revolution in global awareness that is hastening an end to the locking up and isolating of people with disabilities from the community. In Western countries, the trend is towards the closure of large institutions and transfer of residents to independent living within the community.

Scandinavian states were the first to close such residences for people with cognitive developmental disabilities, in the 1970's. Both New Zealand and Canada have since done the same. In the US, two thirds have already been shuttered and even in Bulgaria, a less western country, legislation has been passed mandating the closure of all such institutions by 2024 and the transfer of residents to in-community living with personal assistance. 

In Israel the Bizchut organization has been leading the demand for the closure of institutions, which has been ignored for many years. Only in 2011 did the Ministry of Welfare invite five international experts to draft a literature review of the transfer from dormitory residences to in-community living.

"Research findings demonstrate a clear picture: community services are more beneficial than institutional living for the totality of people with cognitive developmental disabilities", they stated.

The request for a literature review arrived four years after Israel signed the UN Treaty for the Rights of People with Disabilities, wherein paragraph 19 determines that "The State must ensure that people with disabilities will be able to choose where and with whom they live as any person is free to choose and that they will not be forced to live in a specific living arrangement."

In 2012, the State ratified the treaty. Thus so long as residential dormitories operate, the state is in fact in violation of the law.

"The mere fact of life in an institution constitutes the negation of rights", says Ronen Gil Massi, of the ASD community in Israel. "A person who lives in an institution cannot decide with whom he will share his room or whether. A person doesn't even have a place for his personal toothbrush. A person's individual freedom must not be denied just because his only "crime" is that he is a person with disabilities.

Three weeks ago, a man was murdered whose sole crime was that he was cognitively impaired. This must not be permitted to continue time after time, and each time for us to be told "We'll only shut down the problematic institutions." [Source]

Election day thoughts

Our child's murderer at her June 2012 wedding in Amman, Jordan 

(she's second from right). Her husband/cousin is in the middle. The girl
in the blue dress is Ahed Tamimi, a cousin to both bride and groom.

Many of you are surely in a quandary: to believe the flood of negative coverage of Netanyahu or to discard it as fake news. After all, many journalists just want him defeated so should we trust what they write?

For what it's worth, my husband and I - utterly apolitical citizens - can contribute some personal insight into Netanyahu's morality and mindset.

On the day our Malki was murdered in the Sbarro massacre of 2001, Netanyahu was a guest of the Melbourne Jewish community. Local reporters told him that one victim, our child, was an Australian citizen as well as an Israeli. He immediately responded: I will be paying the girl's family a condolence visit upon my return home.

Empty words...

Several years later, the public learned that a deal with the devil, Hamas, to retrieve IDF captive Gilad Shalit, was imminent. Our child's murderer, Ahlam Tamimi, was being mentioned as one probable name on Israel's list of imprisoned terrorists to be "swapped" for Shalit. We fairly inundated the Prime Minister's office and the media with pleas for Tamimi's name to be deleted. Netanyahu's office didn't send even a monosyllabic response. 

And, of course, Tamimi, mastermind of the Sbarro bombing which took 16 innocent lives, (eight of them children) was freed. The convicting judges' warning never to include her in any possible future prisoner swaps was ignored.

Subsequently, Netanyahu speaking on television assured the public that he was sending all bereaved families who had been affected by the release a letter of explanation and apology. When we called his office regarding such a letter, an assistant of his assured us she had personally delivered hundreds of copies to the post office. 

I suppose liars hire liars. Because we never received such a letter, nor did any other of our terror victim friends.

Not long after her release, Tamimi publicized her hankering for another murderer who had been freed in the Shalit Deal - her cousin and fiance. She had been returned to her home in Amman. While he, under the Deal's conditions, was barred from leaving the West Bank. Not to worry. Netanyahu to the rescue. 

We lodged a petition with the High Court of Justice to enforce the Deal's conditions and bar Tamimi's fiance from crossing the Allenby Bridge into Jordan.

Some hours later, our lawyer was phoned by a Netanyahu government official who requested that we temporarily suspend those legal proceedings because all would be well. We need not be concerned.

We naively complied.

Next thing we knew, the Tamimi murderers were celebrating their reunion in Amman before rejoicing fans and media. [For some background: "A wedding and what came before it"]

Well, I suppose, we were actually to blame. Why hadn't we learned the obvious lesson? Never trust Netanyahu!

Now we suffer daily the double anguish of missing our precious child along with watching her murderer - sentenced to sixteen life terms but released after just eight years - enjoying her freedom and brazenly inciting Muslims to "follow in her footsteps and continue the fight".

Food for thought as you head to the polls.

Where's the progress for the profoundly disabled?

Well, it's been a while so I'll update regarding that protest demo I publicized here ["For Israelis with disabilities, two divergent paths"] a couple of weeks ago.

To put it bluntly: a disappointment. 

Meager turnout and infuriating response from the Ministry of Welfare, the building outside of which we protesters stood. A number of people with disabilities participated and expressed their anger. 

The mother of Effie Ben Baruch, the young man who recently died from physical abuse by his caregivers, was there. I approached her asking how she was connected to Effie - I had a hunch she was his mother from her grieving demeanor:

When we first approached the building's entrance gates, a guard asked the man in the wheelchair leading us: "Who is your representative?"

The wheelchair-bound man was duly infuriated: "We represent ourselves!" he responded.

After the protesters were refused entry, they demanded that the director of the Ministry's department for disabilities come down to speak to us. He did not deign to do that.

Instead, some other employee from an unrelated department eventually emerged from the "fortress" and promised that the director will be visiting Effie's bereaved family soon.

Hmmm. I call that a slap in the face.

As I overheard one protester in a wheelchair telling his friend: "This protest takes me back 30 years!"

Precisely. The baby steps of progress for the severely disabled actually feel more like deterioration in comparison with every other area of social welfare.

That impression has been reinforced since joining the Facebook page "Special Needs Mama's in Israel". I hoped to find camaraderie, a common cause, etc. Instead, I sense that parents of children with profound disabilities aren't even on that page's - or society's - radar. We're invisible. The gripes and venting posted on the page make me feel so isolated. 

I fairly pray for the sorts of problems that those parents bemoan. For instance, one mother related how her daughter sat on the curb and cried after waiting three hours for a bus to go to a movie with friend. Several buses had passed her by. As one commenter noted: "I'd have cried too!"

At my husband's urging, I'm considering starting a Facebook page for parents in my boat.

Any of you caring at home for children with serious disabilities, physical/cognitive, and craving such a forum please comment here. If you prefer privacy, I can provide my email address at your request.

BTW, once again, and unfortunately, that protest only received coverage in the Hebrew language media, so I will translate the following piece asap. 

For now, I've done the headline and the intro:

"I am not prepared to be stashed away in an institution": Will the resident who died from abuse advance the closure of institutions for people with disabilities"
The death of Ephraim Ben Baruch in an institution highlighted that the era of institutions for people with disabilities, mostly in private and barely supervised hands - has ended. But the transition to in-community living is happening at a slow pace, thousands live in danger, and the State continues to violate the law. This week families protested against additional neglect from outgoing Minister of Welfare Chaim Katz.

More to come.

At Malki's graveside: Eighteen years

A photo snapped by a friend at the cemetery
during yesterday's memorial service

With the passage of time, I am struck more and more by the briefness of Malki and Michal's lives.

When Malki was still with us, I often related to her as a friend. She was, after all, the oldest of our daughters and extremely mature in her behavior.

But now, after 18 years, it is clear that she was but a child at the time of her murder. Which renders what she packed into those few years all the more incredible.

The giving, the love, the generosity and the volunteering, the smiles and the laughter, the faith and the faithfulness, the flute-playing, the creative artwork - all these she accomplished in incredible quantities and in a mere fifteen years. 

What a child we lost! How does one continue despite such pain?

And an even tougher question: How does one continue in our forefathers' path despite the pain? We grapple with this challenge every day.

This coming Shabbat, Parshat Ekev will be read.

In his commentary on this Torah portion, contained in his book "Esh Kodesh", Rabbi Kalonymus Shapira, the Rebbe of Piaseczna, offers us the following advice.

In the context of the Gemara, Masechet Shabbat כ"ה ע"ב, the Esh Kodesh, as the Rebbe has become known, writes that there are long periods in the lives of all rabbis when "the angel of G-d in them is not revealed" - meaning when a rabbi is not spiritually at his peak. 

In such situations, his students "awaken in him the Angel of G-d". By approaching him and asking him Biblical questions "they themselves cause him to resemble an Angel." 

The inquiries and questions emanating from the youths in our lives are what prevent our succumbing to pain. They keep that inner "Angel of G-d" from "waning and fading", in the words of the Esh Kodesh.

Let us pray that we always have beloved students at our side to provide the strengthening and awakening that will enable us to endure the endless pain and longing.

For Israelis with disabilities, two divergent paths

In Ilay's cafe, via Facebook

Sometimes we are blindsided by uplifting stories about people with disabilities in Israel.

It's important to circulate them, rare though they are, if only to note that Israel is not a desert of insensitivity and exclusion when it comes to our citizens with disabilities.

And here's a link to the (Hebrew-language) tale, via Israel's national TV news, of the mother and brother of one such person, Ilay, from whom we can learn about love, understanding and true inclusion.

If the Hebrew is beyond you, it's the the story of Shulamit Regev, a widowed single mother of twin sons, one of whom has recently enlisted in the army. The other is autistic and non-verbal. The boys have a very close and loving relationship. We are shown clips of them interacting as children and in real time. Then we are told of a cafe that the mother purchased and runs (as "Ilay's Place") where her autistic son works and hosts the customers in his uniquely welcoming way.

We see him in the kitchen demonstrating impressive culinary skills and hugging and kissing each and every customer in his gentle, unintrusive way.

But to inject a dose of harsh reality comes news of the death of Effie Ben Baruch, a resident of a closed institution for people with disabilities.

Cognitively impaired, Effie was allegedly killed by one of his caregivers in the Haifa facility called "Ramat Haifa". This is a link to a Hebrew news report about the tragedy along with photos from the protest rally held opposite that institutions days afterwards:

The poster reads: "Who Will Care for our Children When We are No Longer Here!"

A brief English report ("Disabled man dies after allegedly being beaten by caregiver", Times of Israel, July 26, 2019) says:

A disabled man died early Friday at a hospital in Haifa, two weeks after his caregiver allegedly beat him and caused him severe head wounds, Hebrew-language media reported. 

Efraim Ben Baruch, 29, was a resident in a care center for mentally disabled people. Shortly after arriving at the Bnai Zion hospital his condition deteriorated, with doctors declaring him brain-dead. 

The caregiver, Mohammad Khateeb, 19, from the city of Tamra, was arrested on Wednesday on suspicion of abusing a helpless individual. His remand was extended by six days. 

After Ben Baruch’s death, police said they were upgrading the suspicion against Khateeb to murder. A special investigation team was set up to assist in the probe of the incident. Police also said they would ask the court on Sunday to further extend his remand.

In court last week, an investigator showed judge Rivka Fuchs videos of the alleged abuse, saying there were “11-12 different episodes on the same day. His interaction with the victim is violent.”

Khateeb’s attorney had denied that the death was caused by her client, saying that Ben Baruch was taken to a hospital in the evening while he had suffered the wounds in the morning.

“There was independent harm,” she said, without elaborating.

A further response to Effie's death has been organized by Bizchut, Israel's Center for the Rights of People with Disabilities (my translation from Hebrew).

Sunday August 18, 2019, between the hours of 10:00 and 15:00, we will be protesting opposite the offices of the Ministries of Welfare and Treasury on Kaplan Street, the Government Offices Quarter in Givat Ram, Jerusalem, demanding a halt to the violence in institutions and hostels for people with disabilities and demanding their transfer in an orderly and respectful manner to independent lives with the personal assistance that they require before the next incident of murder occurs!

I plan to be there. If you're in Israel, I hope you will too.

At last - a pretty solid diagnosis

Let's hear it for the whole exome sequencing (WES) test and the Ministry of Health! (After all, it picked up the tab.)

After 24 years, we finally have a pretty solid diagnosis for Haya's symptoms; idiopathic has been officially deleted from our lexicon.

What was found is a mutation on the gene SCN2A. We learned the news in the geneticist's office which we entered and exited in 15 minutes.

A couple of weeks later, we received a more detailed summary of the findings which told us, among other things that a genetic variant was found which is designated VOUS or Variant of Unknown Significance on the gene SCN2A on Chromosome 2, exone 5

Mutations elsewhere on this gene are known to be the cause of Early Onset Epileptic Encephalopathy Type 11 (or EIEE11), a syndrome with symptoms identical to Haya's. 

While Haya's variant is on a spot where no other person is known to have one, the geneticists concluded that because 

"her clinical picture matches the clinical picture described in the EIEE 11 Syndrome, we are inclined to say that there is a high probability that the variant found in checking SCN2A which is described in the gene exome constitutes the cause of her illness... The laboratory in Germany that carried out the test concurred that the finding is a possible identification of the cause of her illness... It can be said with high likelihood that the parents and their offspring are not in any increased danger of a repeat of this anomaly in future pregnancies."

The geneticist recommended we consult a young local pediatric neurologist who might have some fresh treatment suggestions. She also promised to send Haya's file to a neurologist in California who is researching this very syndrome.

But trusty Google has provided precious little further info. We now know that this diagnosis is rare, still being researched and that at this point, no reliable treatments are known. 

We're hoping that one of those two new neurologists will help us. It's the nearly two and a half decades of clueless doctors that I've been vividly recalling. Clueless and arrogant.

There was the developmental pediatrician who was the first specialist we consulted. He summoned his entire staff at the Center for Child Development, which he headed. into his office one morning while he examined Haya. With utter confidence, he declared to his audience that she had been infected and damaged by CMV in utero. The trouble was, the blood test which I subsequently had proved him just as utterly wrong. I hadn't had CMV during my pregnancy.

That didn't phase the guy. Several months later, he declared to me with the same utter confidence that Haya had Rett Syndrome. At the time, there was no blood test to contradict that wild guess. But her then-neurologist pronounced it a false diagnosis. She didn't have any of the major symptoms, one being the "hand-washing" which had prompted Dr. Andreas Rett to classify this group of children as distinctive. 

A few years later, Israel's chief Rett expert examined her and declared that her gait indicated that Haya was indeed a Rett child. But when new blood tests finally appeared on the scene, they proved definitively that Haya did not have Rett.

I also recall another neurologist's declamation to me when Haya was about a year old: 

"She does not look like a child with a genetic disorder. It's not genetic." 

He also advised us to "send her away to an institution."

By now I'm sure it is clear why I am not a huge fan of neurologists. (You can read more about how I developed that distaste for them here: "A hospitalization journal".)

The silver lining to this bleak news is that the mutation is de novo. That means it wasn't inherited and, consequently, is of no concern to our offspring. Its de novo-ness was confirmed by doing the same whole exome test for me and my husband which proved that neither of us carries that mutation. 

One article I read posited that the most severe SCN2A cases are the de novo ones. A cloud in the silver lining?

One article that our son-in-law, a doctoral student of genetics, found us reports surprisingly encouraging results with unusual drugs. Conventional anti-epileptic drugs, it seems, actually exacerbate seizures for some Early Onset Epileptic Encephalopathy 11. 

But two drugs that are not intended to treat epilepsy were effective. Could that be why we find that Paracetamol helps her during a string of seizures?

In the meantime, here (above) is Haya showing slight progress with pushing her switch to play music.

Is Aleh unstoppable? Let's hope not.

Aleh Jerusalem via Google Maps

A dear friend of mine is on the Aleh donors' mailing list (a fluke - she has never given them a cent).

She shared with me a recent e-mailer urging the Aleh donor base to dig deep into their wallets to grant the children "an unforgettable summer, filled with fun, laughter, and joy!"

The PR piece boasts that "they will be unstoppable". It never clarifies who that "they" is: the children, or the "dedicated staff and volunteers". But, of course, obfuscation is the name of the Aleh PR game.

So this PR piece convinces donors that their cash keeps Aleh afloat and will send 120 children to camp. 

Aleh's 2017 annual report [online here] tells a different story. There we learn that Aleh derived about 82% of its income from government sources - mainly the Ministries of Health (via the health funds or kupot), of Welfare and of Education.

Source: "Aleh 2018 End of Year Report" (Feb 19, 2019)

Bottom line: It's mostly Israeli taxpayers who are funding Aleh, whether we choose to or not. On their own figures, income from donations amounted to slightly less than 11% of total income.

But its duplicity is not the main reason I sincerely hope that Aleh is ultimately "stoppable". 

Below are five photographs of a friend's daughter who attended Aleh Gedera's school as well as its institution's afternoon program. On several occasions when my friend collected her child, she found her to be in a less than desirable state.

 Only on one of those did Aleh staff phone to forewarn her of her child's injuries.

The first and last horror shots were from the school; the others are from the afternoon program (the מעון) at the institution. The mother gave me permission to post these images.

Any institution that either inflicts such shocking wounds - or allows them to be inflicted by another child - must not be left "unstoppable". 

Help stop the sub-standard care of Aleh so that the children locked up there can return to the families and the community where they deserve to live.