Inundated with awareness - but still no effective treatment

Well, it's clearly the gift that keeps on giving.

We'd barely recovered from all the "excitement" generated by SCN2A Awareness Day ["Life with the SCN2A mutation"] when February 29th rolled along. For those who were unaware of it - and I myself was until my on-line SCN2A support group annouced it - today is Rare Diseases Day.

With some 600 documented cases globally, this syndrome definitely deserves a place in that category. To learn more about life with this diagnosis you can read what I shared here.

And, at the risk of haranguing you, I will, once again, urge anybody in Israel, whose child has this diagnosis to contact me. You can do so here, as a comment below, or via email.

I'm sure that pooling our knowledge and experiences will benefit us all.

In researching this post, I also discovered that Israel has its own Institute for Rare Diseases. I'll be contacting it to find out whether they have any experience treating  SCN2A Syndrome.

Hoping that will produce something positive to share here soon.

Life with the SCN2A mutation

Image Source: Extracted from
this brochure

We had barely adjusted to the new reality of a firm diagnosis for our daughter Haya when the "awareness day" of her syndrome popped up.

February 24th was SCN2A International Awareness Day. I suppose its general significance lies in increased fundraising efforts which will enable new research successes. There still seems to be precious little knowledge about how to treat this horrible condition.

Note: I've seen it called "a catastrophic life-altering diagnosis" and I couldn't agree more.

Haya's refractory epilepsy continues to oppress her and us just as it has since it began 23 years ago.

But having a name for Haya's symptoms has nonetheless brought changes, albeit marginal.

For one, I have less hope that she will ever improve, even minimally.

I mean, for now there's no way to fight those mutated genes inhabiting her body. Perhaps one day medicine will discover some gene- altering treatment. But nobody is talking about anything like that at this stage.

There is, however, a thin silver lining, namely the relief we feel about our other children's genes.

While every one of their previous pregnancies filled me with anxiety, even dread, I'm now a tad more relaxed and stick to the standard pregnancy concerns.

We are still at a loss as to which new drug to try out in our quest for a modicum of relief from Haya's seizures.

The neurologist we thought would help us has gone AWOL and while she is very senior and experienced, she conceded that she has no other SCN2A patients.

Despite a concerted effort, we have failed to locate any parents of SCN2A children here in Israel who might be able to suggest a local doctor familiar with this mutation.

So, if you are in that category or know someone who is, please contact me here or at frimet.roth@gmail.com

Meanwhile, Haya now works with two switches (see image on the right). She decides which hand to use.

A big step forward for her.

No magic in this gala

In just a few hours, Aleh will celebrate its "Magical Gala", whatever that means. [Background in my earlier post "A gala to end all galas?"]

I, for one, am at a loss to see any "magic" in what Aleh offers children and adults with severe disabilities. It locks them up in large, isolated institutions the likes of which have been all but eradicated in other developed countries. 

It hogs a huge chunk of government funding available for the population with disabilities - by my calculations based on public records, some 80% or more of Aleh's funding originates in various government departments.

Of course, these aspects will be tidily swept under the carpet at the dinner Aleh donors will enjoy tomorrow. 

Undoubtedly, no speakers will mention that Bizchut, The Israel Human Rights Center for People with Disabilities, recently set itself three goals, one of which (which I translated from the Hebrew) is working "towards the passage of legislation based on every person with disabilities having the right to live in the community with the assistance that he needs".

The first of Bizchut's five "core values" listed [here] on its website is:

"Independent Living - Promoting the right to live in the community and receive personalized services. Bizchut pursues this goal by exposing the violation of rights inside institutions and calling for a transition from institutionalization to independent living. Bizchut is also promoting legislation that will establish the right of every person with a disability to live independently in the community."

There is no doubt that Aleh's "core values" clash head on with mainstream views of care for citizens with disabilities.

Supporters of Aleh - every one of them that I have ever encountered - are oblivious to these truths. I'll wager my last shekel that tomorrow's "Magical Gala" will only reinforce that.

A gala to end all galas?

Source: Israel Knesset

A recently-released Knesset report highlights the disappointing and anachronistic policies practiced by our government.

Entitled "Children with Disabilities", the succinct survey [Hebrew] was presented in May 2019 to the Knesset Committee for the Rights of Children in advance of the start of the committee's work in the 22nd Knesset.

It originated in the Knesset's Center for Research and Information.

Despite the progress achieved in this domain by most other Western countries, the report demonstrates how Israel clings to its backward ways - ways detrimental to the population they impact - toward citizens with disabilities.

As the most vulnerable in society, they and their families passively accept whatever the "powers that be" dish up.

Often it is presented to them as "the ideal" solution. Or as the embodiment of "inclusion" in the community. Or as "a real family". Among the most brazen proponents of that injustice is the largest chain of closed institutions for people with disabilities in this state, Aleh. [Those quotes can be found here, here and here in Aleh's marketing materials.]

Referring to 2017 data, the Knesset report says 2,740 children with disabilities lived in some kind of "out-of-home" arrangement. These included hostels, apartments, foster families and assisted living.

But the vast majority of them - 1,305 - were stuck in institutions a.k.a. "dormitories". Only 646 were in foster care.

On February 12, 2020, Aleh's donors will gather in Jerusalem to celebrate the policy of separating children from their parents and locking them up in large, isolated facilites. They will hear speakers laud that living solution for those who need round-the- clock assistance. They will ignore the alternative options for care that this population is entitled to and that such families receive overseas... but that are generally still unavailable in Israel.

When will Aleh's supporters remove their blinders and face the facts? Here's hoping this year's Aleh gala will be its last.

Another deal with the devil?

Image Source: Haaretz

I would draw your attention to Yossi Verter's analysis in Haaretz today of the deal Netanyahu may have just brokered with Putin to win the release of Kremlin hostage Naama Issachar ["It’s No Election Campaign Gift or Friendship: Putin Just Blackmailed Netanyahu"]. 

In a tone rarely heard when recalling the Shalit Deal - other than by terror victims like my husband and me - he links the two releases thus: 

"She [Naama Issachar] will return home not because Netanyahu is a great leader but because, in an election fateful for his future, he’s willing to pay a high price for the public’s sympathy. If relations between him and Putin were really as wonderful as he’d like us to believe, this whole story never would have happened.

Netanyahu freed Gilad Shalit from Hamas captivity at the cost of more than a thousand terrorist killers, just to extinguish the last embers of the social protest movement that was putting him in a panic. Now he’s freeing Naama Issachar for major concessions, most of which Jerusalem will keep trying to hide."

Verter also notes how Sarah Netanyahu prominently injected herself into every photo of the two leaders and of Naama's mother, Yaffa. 

I can't help recalling Bibi Netanyahu's interview with the German paper Bild, shortly after he released 1,027 terrorists including Ahlam Tamimi, our Malki's murderer. In it, he revealed that Sarah had pressured him to do that deal. [See "First lady follies", February 12, 2016]

  

Did she play a key role in this self-serving, lop-sided swap too?

Either way, it is apparent that our prime minister hasn't changed since 2011. He remains a man guided by this ethos: "Anything goes if it will keep me in power."

Aleh and food for thought

Meshi's parents interviewed in the KAN report detailed below

Just focus on the food. That’s always a safe strategy.

It's no surprise that promos for Aleh's upcoming fundraiser are heavy on the menu and light on the issues:

"Chef Ilan Garussi, chef and owner of Satya Restaurant, and Janina Bar Hama, owner of the Olmaya Hall, already began their preparations for ALEH’s Magical Gala Dinner by visiting ALEH Jerusalem to become acquainted with ALEH residents and gain some firsthand knowledge of ALEH’s amazing educational and rehabilitation activity." [From the Aleh website this week]

It's safe to presume that donors attending the Magical Gala, as Aleh calls its event, will not be exposed to any of the negatives of Aleh's institutions.

They won't, for instance, hear Naama Lerner, director of Bizchut, Israel's leading and longest running organization devoted to promoting the rights of people with disabilities. She appears on this KAN [Israel TV Channel 11] clip about the recent deaths in Israel of two young people with disabilities who resided in large, closed facilities similar to those operated by Aleh.

The journalist notes that Lerner wasn't surprised by the most recent death, that of Meshi Peretz, a resident of the Neve Ram residential institution for people with disabilities, on December 16, 2019.

Lerner (my translation from the original Hebrew) says:

"Death is the really, most extreme case. There are many, many, many problems faced by people in institutions. Let's start with the "soft" items. The "soft" items are that a person is deprived entirely of his privacy. He doesn't determine who will sleep with him in his room. He will never have a private room. People who are 20, 30, 40 years old who need a private room, personal closet, personal clothing, a moment to be alone. What do the institutions do to prevent this? They shackle them to beds, isolate them in rooms, tie them to restraint chairs, place splints on their arms so they can't move their arms. All these things are also prohibited by law."

Aleh's guests will also most certainly not have their tasty meal marred by the account of Meshi's mother of the many drugs that were administered to her daughter by that institution. Mrs. Peretz explained that she felt compelled to authorize them because if she refused and something disastrous happened to her child, wouldn't she then be blamed? How could she counter the institution's assertion that the medications were necessary?

Meshi had moved to Neve Ram two and a half years earlier. Six months into her stay, a series of hospitalizations began for bone fractures and seizures though, as her mother notes

"Our daughter was not epileptic and until she moved there we didn't know what a hospital was.”

They will probably not hear from Professor Avinoam Reches, a senior neurologist at Hadassah Medical Center and a former Chairman of the Ethics Committee of the Israel Medical Association. He explains in the KAN report (again, my translation to English) that according to hospital reports

"Meshi, an 18 year old autistic girl with cognitive impairment, arrived with a swollen stomach and on the verge of death, she was 'in sceptic shock' with no blood pressure, no pulse. Her extremities were cold so undoubtedly in the hours, the day preceding she wasn't healthy. Somebody should have checked on her. Nobody looked at her there. Nobody approached her. Nobody checked her. The doctors wrote that she had "agonal breathing", meaning she was in her final breaths. She was dying in her bed in that institution... Nobody raised a red flag."

Naama Lerner adds:

"There were deaths in institutions with question marks even before Meshi's. [For instance] Effie ben Baruch, may his memory be a blessing, whose blood had not yet dried."

Effie, an autistic young man from Bet Shean, a resident of the institution, Ramat Haifa, died five months before Meshi. (I wrote about that case in September 2019 here.)

Aleh donors will undoubtedly be spared the sobs of his mother:

"Effie was a happy boy, a delightful boy, a loving boy who caused others to love him." She breaks down, "They killed my child...The [closed circuit] cameras show that the aide choked him. [Effie also managed to tell his family that he was beaten by his caregiver at the institution. F.R.] and he lay sprawled on the sofa from 10 in the morning until the evening. They could have saved my child!" (My translation of what she said in the KAN segment.)

Dr. Reches explains the conduct of such institutions thus:

"If I were a director of a facility of this sort, I earn per capita, which means, I want to receive the payment from the Ministry of Welfare per head annually and at the same time I want to save all the expenses that I possibly can.  If I can operate a shift with one person, with one nurse, and to keep all the patients quiet with drugs, then I have earned money."

And it's safe to presume that nobody at the Aleh "Gala" will learn about the documented "choking" deaths of residents in Aleh institutions. Because the parents of those children did not publicize their tragedies, they were only sketchily reported in local newspapers in 2019 and 2000. Most citizens are unaware they occurred. (I wrote about two here.)

What I posted on my blog several months ago ["Institutions: The world goes one way, Israel and Aleh the other"] will also surely remain concealed from the Aleh supporters. Here's an excerpt:

"Some 6,100 people with cognitive developmental disabilities live in 63 dormitories... The overwhelming majority are institutions owned by private companies that naturally see before their eyes the bottom line. The above atrocities [the case of Effie ben Baruch and other cases of abuse] 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... 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."

Instead, it's a safe bet that attendees will hear that the institutionalized living option of Aleh is ideal for its residents and that no comparable alternative exists! 

Israel Prize recipient Major General Doron Almog will likely sing the praises of Aleh's largest branch, Aleh Negev, known also as Nahalat Eran after his late son who resided there from the age of 13 until his death at the age of 23 in 2007.

Who will "serve up" with that "magical" gourmet meal the "magical" message of equal rights, independence and true inclusion in the community?

Netanyahu and another thwarted extradition

Litzman and Netanyahu [Image Source]

There has been much written about Netanyahu's role in Israel's failure to extradite alleged sexual predator and pedophile Malka Leifer to Australia. His recent appointment of ultra-Orthodox Yaakov Litzman as his next Minister of Health has outraged many, particularly Australians.

Litzman is suspected of assisting Leifer's evasion of justice in his previous capacity as Deputy Minister of Health. There are widely publicized claims that Litzman pressured psychiatrists who examined Leifer to testify that she was mentally unfit to be extradited.

Several state psychiatrists determined that Leifer was feigning mental illness and was fully capable of facing trial, despite her lawyers' contention that she is mentally unfit. But a major setback occurred when a court-appointed psychiatrist recanted his assessment that she was mentally fit. Israeli police have determined that Litzman, one of the most powerful ultra-Orthodox politicians in Israel, was behind efforts to pressure the psychiatrist to change his assessment. They recommend Litzman's indictment for fraud and breach of trust.

Yet this is the man that our prime minister has selected as his next Minister of Health! Two weeks ago the government dutfully approved Litzman’s appointment.

From Haaretz:

The president of the Zionist Federation of Australia published a letter on Sunday protesting Prime Minister Benjamin Netanyahu's decision. And the Australian Jewish community is united in its fury over the matter. ZFA President Jeremy Leibler called the appointment a “slap in the face” of the Australian Jewish community, the Australian people, Australian immigrants in Israel and most of all, Leifer’s alleged victims.

However despite the in-depth media coverage garnered by the Litzman-Leifer affair, little is known about Netanyahu's role in another case where a criminal's extradition to stand trial is being blocked. This one involves Hamas terrorist Ahlam Tamimi, murderer of 16 Jews, among them our chld, Malki. Her extradition is being demanded by the US from Jordan.

Jordan has refused to abide by the 1995 extradition treaty it signed with the US and which the US explicitly states is valid and binding. Little pressure is being exerted by the US State Department on Jordan to reverse its decision to give that alleged murderer - Ahlam Tamimi - refuge and the freedom to incite her millions of fans to follow in her footsteps. She accomplishes that through her intense TV and social media presence.

One man we can thank for this travesty of justice is Prime Minister Netanyahu. He executed the now maligned Shalit Deal in 2011. Despite our desperate attempts to prevent Tamimi's inclusion in that catastrophic "deal", before its execution, Netanyahu has never made any contact with us – not before, not during, not after that deadly transaction.

We heard nothing from him when he decided – against the clear stated policy that underpinned the Shalit Deal - to let the fiancé of our child’s murderer cross the Jordan River and be united with her. And then just a few weeks later, to marry her in a wedding that got huge Arab media attention.

Freed in the 2011 Shalit Deal, Ahlam Tamimi is currently
a fugitive from US justice [Image Source: FBI]

When the US authorities decided to seek the arrest and extradition of Tamimi from Jordan once the Shalit Deal was done and to have her face terrorism charges in Washington ["15-Mar-17: Sbarro and justice"], Mr Netanyahu remained publicly silent.

However people we know in Washington told us influential US officials had given them to understand – strictly off the record - that the Netanyahu government was opposed to having Tamimi handed over to the US for prosecution by the Department of Justice.

Our understanding is that Mr Netanyahu not only ignored us at every step, ignored the letters we arranged to be delivered into his hand, ignored the pleas we made to keep her in prison. More than that, and while we can’t prove it, it appears he actively undermines our current efforts to see her brought to justice under US law. 

Netanyahu's infuriating conduct before, during and after the Shalit Deal will obviously never result in any criminal charges like his other misconduct has.

However, it would behoove all voters to consider the above when they vote in March. Do you really want the champion of mass murdering terrorists to continue ruling us?