Hello, my name is Yedid Tzion Shimshi. I am the father of a sweet 8 year old boy who suffers from a terrible disease called AHC. I turn to you and implore you to aid a law obeying citizen who has lost faith in our country’s health and law systems, and to make the National Insurance institute recognize my son’s disease and define him as entitled to receive 100% of Mobility Allowance. Doing so would ease his ongoing suffering, if only by little.
Yedid Tzion and his son Shmuel
AHC (Alternating Hemiplegia in Childhood) is a rare and incurable disease, which is characterized in severe sudden paralysis seizures, which affect the body entirely or partly, and can last from several minutes up to 10 days in a row. The disease might pass when he’ll grow older (according to the Appeals Committee’s testimony), but there’s no certainty in that. There are only 350 known AHC cases in the world (according to the National Insurance), and only 8 known cases here in Israel.
My beloved son Shmuel was unlucky to get this terrible disease. The paralysis seizures come by surprise, and with no preliminary signs. Imagine that your son, a school pupil, is sitting in class just like any other regular child, and suddenly – his entire body paralyses, he loses the ability to move his four limbs or any section of his body, and he falls on the classroom floor, helpless, unable to control his bowel movements – and all of this is happening in front of his classmates.
Physiologically speaking, during a seizure, my son’s body becomes paralyzed. Sometimes, the seizure lasts for several days in a row, and has various levels. He loses the ability to walk independently; he can’t perform basic actions such as eating, drinking, going to the toilet and taking showers. Psychologically speaking, my son suffers from deep inferiority complexes, lack of self confidence, permanent anxiety from the next upcoming seizure, and humiliation from pupils who make fun of his condition. These feelings are expressed by continuous furiousness, anger at the seizures that are like a dark cloud over his life routine, lack of faith in us because we can’t help him out of his condition, and fear and anxiety from the unknown, which he’s experiencing in every moment of his life.
We, his parents, have to deal with raising him under the most difficult conditions. When he’s having a seizure, we have to climb 3 stories while carrying him in our arms, feed and water him, take him to the toilet, and shower him like he was a baby. All of this isn’t contributing to his self confidence.
We are residents of Sderot, which is known for its problematic security situation – A situation that forces everyone to be nearby protected spaces at all times. It’s hard for us to place our paralyzed son in or take him out of our family car, which isn’t suited for his needs, and during missile attacks, the speed of action is crucial. A delayed action can cost his life, and the lives of the people around him. Because of this, we are unable to place our son in any social framework outside school. We take him out of the house only when there’s a serious need to do so, and we regret to say that he spends most of his free time at home, lonely, unlike other children at his age who have a normal and functional life. We don’t have a protected room in our home.
In order to ease Shmuel’s coping with these difficulties, and our situation as parents, I filed a request for Mobility Allowance on his behalf to the National Insurance. Despite the severe mobility disability which I described, based on presented medical opinion reports, the medical committees which discussed our issue turned down all my requests, providing different reasons for the refusal each time.
For over two years, I’ve been through medical committees, appeal committees, and the regional Labor Court, until the fourth appeal committee agreed to define my son with a 60% mobility disability, with the explanation that his paralysis isn’t consecutive, since it only happens occasionally. This ruling granted my son the Mobility Allowance, but only for a short time, as will be described hereinafter.
After having difficulties in handling the bureaucratic burden on my own, I requested help from the legal aid clinic for the residents of Sderot, which is located at the Hebrew University’s Law Faculty in Jerusalem. The clinic’s staff came to our help willingly and voluntarily. Their lawyers filed an appeal to the regional Labor Court, in order to increase Shmuel’s percentage of mobility from 60 to 100%, so that we’d be entitled to receive the needed financial aid and be able to buy a car and equipment that suits his needs, since we can’t afford these on our own.
The story was far from being over. Because of the filed appeal, while it was pending in court, the National Insurance institute decided to start a full scale war against us, and sent us a letter saying that the partial Mobility Allowance, which my son had been receiving for a period of time, is cancelled. They said that my son’s Mobility Allowance was approved “by mistake”, and that the request for it was based on petty detail and a partial clause of the Mobility Agreement between the Finance Ministry and the National Insurance institute, according to which only people who were defined by the medical committee as having a permanent mobility disability would be entitled for the Mobility Allowance. They also informed me that they’ll request the erasure of the resulted debt.
The National Insurance didn’t stop there. They sent me another letter, demanding me to retroactively return all the Mobility Allowance money that they had been paid me so far – approx. 55,000 NIS.
It’s unnecessary to say that I don’t have that kind of money, and the legal aid clinic has added an addition to its appeal to the Labor Court, regarding the National Insurance’s last decision. The National Insurance offered to have my son’s case re-examined in yet-another medical committee. I had no other choice but to accept it, and now we are waiting for the Court’s ruling, which will validate the decision to present the issue again to an appeal committee, or do whatever the Court sees as fit.
I’m fully aware of that fact that you must be busy and troubled with many issues during these recent times, but I ask you with all my heart, as parents to children, as the people who manage this country and indicate the operations of its various institutes: Please apply all of your influence on the people who are related to this issue, so we can aid our young son in dealing with this horrible disease, and may you be greatly rewarded for your kindness to us.
Yedid Tzion Shimshi
Neve Eshkol 1 Sderot 87043
Phone #: 08-6612345, 054-5966667
Dear Mr. Yedid Tzion Shimshi ,
I have just discovered your post. My heart goes out to you and your famiy. Although I am not a citizen of Israel, I am a mother whose son also has AHC. Below please find a website that belongs to Dr. Kathryn Swoboda a geneticist and specialist who works with children with AHC. I will forward your post to her and to our international AHC chat group in the hopes that she may be able to help and perhaps that some of our members have relatives who live in Israel who could also help you.
I am also including a link to an article from the European AHC group that discusses the management and treatment of AHC.
My prayers are with you and your family.
Dr. Kathryn Swoboda – AHC specialist and AHC information
AHC chat group -AHC families helping other AHC families answer questions and get information
B. Neville; The treatment and management of alternating hemiplegia of chilchood, UCL, UK, 2007. Download publication (english)