Terrorism through the years

Image Source: Times of Israel

Today the Jewish nation mourns the passing of Yehuda Wachsman, father of Nachshon Wachsman, the soldier who was kidnapped and murdered by Palestinian terrorists in 1994. We were present at the young soldier's funeral.

Much as all Americans alive in 1963 vividly remember where they were when they learned of JFK's assissination, so too do all Israelis remember where they were when they learned of the tragic fate of both Nachshon and Nir Poraz, the soldier killed in the rescue attempt. 

The Wachsmans lost one son to terrorism and also grappled with raising another child, Rephael, who has Downs Syndrome. Arnold and I always felt a kinship with them because of the two burdens we share.

In his last interviews, Yehuda Wachsman's compassion, insight and virtuous character are evident.
יהי זכרו ברוך

On this day, it is appropriate to note the headlines circulating about an imminent prisoner release which this government seems hell-bent on carrying out. The payment it demands - information regarding the fate of the three Israeli citizens who crossed the Gazan border and the return of the bodies of three Israeli soldiers - is reminiscent of the one that propelled Netanyahu toward the 2011 Shalit Deal. That resulted in the deaths of numerous Jews at the hands of releasees who soon resumed their bloody "careers": "ישראל מוכנה לנקוט צעדים חיוביים בעניין עסקה" via Israel Hayom (in Hebrew).

Ahlam Tamimi, the confessed and proud mastermind of the Sbarro bombing of 2001, was among the 1,027 terrorists freed then. One of her sixteen victims was our child, Malki.

Since being freed,and "exiled" (Netanyahu's phraseology) to her homeland, Jordan, she has tirelessly utilized social media and TV platforms to incite her adoring viewers to follow her lead.

Let's remember how effective the court's sentence of 16 consecutive life terms was in her case. It included the judges' warning to future governments never to release Tamimi in the context of future "deals".

I fear yesterday's military court's decision will prove equally irrelevant. It sentenced a Palestinian man to four life terms over a pair of December 2018 terror attacks in which two soldiers and an unborn baby were killed. 

Tamimi's freedom and the protection she enjoys from Jordan's king highlight the impotence of such ruliings in the face of government goals that trivialize our judiciary.

Today, it is left to the US to seek justice and silence this dangerous terrorist, Tamimi. Since three of the Sbarro victims - including our Malki - were US citizens, it has demanded that Jordan abide by the 1995 Extradition Treaty between the two countries so that Tamimi can be tried in a US court. 

Faced with Jordan's long-standing refusal (since 2017) to comply, the US is now threatening to impose sanctions that will withold millions of dollars in annual aid that Jordan stands to enjoy.

We created a petition a week ago ["Demand that Jordan Extradite Celebrity Terrorist of Sbarro Massacre NOW"]. We hope it gets wide support and your help. 

Long live long-distance doctoring

Whenever feasible, we handle Haya's ailments by phone or email with our pediatrician and neurologist. 

Because trekking out with her every time - into the wheelchair, out of the wheelchair, into the car, parking, wheeling her to waiting rooms - just wasn't an option.

Now, of course, there's Covid-19 keeping us away from waiting rooms. Suddenly, tackling Haya's care by phone and email is the new normal.

So last week we had our first official telemedicine visit with a doctor. who has never met her. The issue was her acne which has worsened in recent months. While it obviously doesn't worry her, it disturbs me. So I made an appointment for a telemedicine consultation.

Our health fund now offers an app that provides a split screen during the consultation, constantly updates your number in the waiting line and enables you to send the doctor info and questions beforehand. The visit itself was relaxed, focused, efficient and took five minutes. We came away with a digital prescription for acne ointment and an invitation to return in three months. 

So let's hear it for telemedicine!!!! And for tending to the minor health issues of people with disabilities - not only the life threatening ones.

Here is Haya showing the results of just one week's application of anti acne ointment.

Embraced by the SCN2A community

Source: https://www.scn2a.org/

Last week I participated in a second Zoom session with other parents of children with the SCN2A mutation. As I've mentioned, we learned in August 2019, after 24 years of searching, that the underlying cause of Haya's disabilities is that genetic mutation.

The support group I've joined has nearly 700 member families from around the world. 

That Zoom conversation had six other participants. One from Kansas City, one from Massachusetts, one from England, one from Queensland, Australia, one from Germany. It was so interesting and edifying.

The two American mothers were involved with the formation of the SCN2A support group in 2013. So they had history to share e.g. when there were only a handful of members they concluded that the mutation must be limited to those with Irish/British ancestry, which they all had. 

That was debunked soon afterwards.

Next came the revelation that some children with autism have the mutation. Today, with US insurance companies funding genetic testing of autistic, most of the documented SCN2A children are afflicted with autism rather than Early Onset Encephalopathy Type 11 is which Haya has.

 
I also learned a bit more about the difference between Gain of Function and Loss of Function children. It seems that when epilepsy erupts later than the first few months of life, it's most likely that the child has Loss of Function, in which case meds that are categorized as Sodium Channel Blockers will exacerbate seizures. 

That would explain why Phenytoin, one such drug, only worsened Haya's seizures when we tried it several months ago. A neurologist familiar with SCN2A would have known that, since her epilepsy erupted at 14 months old, Haya is probably a Loss of Function child. 

Consequently, Phenytoin was a bad choice of med. But her neurologist has told us that she has no other SCN2A patients.

I recently acquired a list of Israeli doctors who have written articles related to this gene. (The parent from Germany who Zoom-chatted with us shared it with me.)

I intend to inquire whether any of them have clinical experience with SCN2A patients.

Me ZOOMing with the group

I also found out at that chat that research into gene therapy for this mutation has reached the stage of clinical trials on humans. It goes by the name Antisense Oligonucleotide Therapy. 

Unfortunately, if proven efficacious, it will only be beneficial to those who have Gain of Function. So Haya is out of the game.

Finally, it was inspirational to connect with other parents of profoundly affected children who have not institutionalized them, who continue raising them with love and devotion despite the challenges involved. 

I still vividly recall a neurologist advising me to institutionalize Haya when she was one year old! That same advice was repeatedly handed me over the years until she aged out of the educational system at age 21.

When will Israel abandon its archaic approach to caring for its most vulnerable children??? When will institutions like Aleh be shuttered???

In the meantime, readers, if any of you knows of an SCN2A child in Israel, please contact me!