When M.S. enters your home – Sarit’s Story

by

Written by Sarit Kleiman

Synopsis

Three weeks after the birth of their son, Arie Biton was diagnosed with M.S. A pioneering limited clinical trial for Israeli qualifying patients, using stem cells in Hadassah Ein Kerem is led by Prof. Dimitrios Karussis. This could help find a MS treatment and is missing $1 million. Sarit Kleiman took it upon herself to raise this money for the clinical trial that can help her husband, by starting the ‘My Anchor’ crowd funding campaign with the support of celebrities and fashion chains to bring awareness in social media and TV. Calling for donations and selling “My Anchor” bracelets, each with a tag attached with the message ‘My Anchor’ in front, and in the back – ‘thank you for being the anchor of MS patients. Upload your photo with the anchor and tag it with the people that are the anchor in your life.’

Fighting for his life

Sarit Kleiman has a mission: to save her husband, Arie, who was diagnosed with MS. She must raise a million dollars to fund a revolutionary experiment to find a treatment for the disease. So how does she plans to accomplish this challenge? With the sale of tens of thousands of bracelets, Lance Armstrong-style, and incorporation of celebrities in  her campaign. “Arie will be back on his feet,” she promises.

Sarit Kleiman fell in love with Arie Biton when she was 17, “because he made me laugh and also because he loved to sing loudly”. Five years ago, when he was diagnosed with multiple sclerosis, she said to him: “I do not care if you walk with a walker or sit in a wheelchair, you still love to sing loudly and you still make me laugh more than anyone else”.

Now she is taking an unusual move that gives an answer to the question of what love is. Kleiman set herself a goal to raise the one million dollars that are required to finance a revolutionary experiment, that could save her husband and thousands of patients in Israel. This is a pioneering clinical trial led by Prof. Dimitrios Karussis from Hadassah Ein Kerem Hospital.

The first test results, in which stem cells were injected into the spinal fluid, showed significant improvement in patients’ disability levels and received international recognition from the medical community.

“A million dollars is a lot of money, right?” She asks, and immediately answers: “What is a million dollars compared to the moment when I’ll return to my husband into the kitchen?”

I don’t understand?

“I make miserable dinners. It was Arie’s role. As soon as he is back on his feet, he will return to cook and bake and I’ll go back to the status of a queen who doesn’t step into the kitchen.”

Arie bursts out laughing. “I used to be addicted to any game that has a ball and rivalry – football, basketball, handball, tennis, you name it, I don’t dream to run like I did in the past. My current dream is much more modest – to pee standing up.”

Without bitterness and self pity

In this story you won’t find even a little bit of misery, bitterness, victimhood or defeat. It has a great love, endless determination and hopeless optimism. Professor Dimitrios Karussis also believes Arie will stand in the kitchen, cooking a feast to all those good people who contributed to ‘Operation Anchor’. His wife battle is not only for her husband, it’s for the six thousand MS patients in Israel and more than two million people in the world who are waiting for the drug.

It all began when a relative of Arie, who lives in Paris, offered that he should meet Professor Karussis. “She described him as the ‘Urim and Thummim’ of Multiple Sclerosis,” says Arie.

“The first phase of the Hadassah MS trial showed some improvement and halting in the deterioration in patients with multiple sclerosis and muscular dystrophy. I saw a film of a patient from London who came to Jerusalem to participate in the trial. She had 11 injections of stem cells, and stood up from the wheelchair. She didn’t begin to run like Popeye, she walks slowly and limping, but she has balance and she stands up. It’s amazing”.

Prof. Karussis checked Arie and said: “You seem to me appropriate in terms of age and physical condition, but we just got the approval to start clinical trials, and we are currently in the recruiting stage. Will be in touch.” Bimonthly Arie sent an email to hospital and the heard nothing had changed.

“That’s what was driving me crazy,” says Sarit, “the fear that maybe I did not do enough. Even though I have two children – actually three, Arie is the third baby that requires energy and attention – I decided I had to do something. Although I run a business where work must be done the same day, I discussed with a friend the idea to produce a sales event of designer clothes. Five months ago we went to the professor to a meeting, and I told him, ‘If we’ll earn 50 thousand shekels, the money will be transferred to your department’.

“The professor told me that the Ministry of Health approved to have 48 patients in the trial that costs two and a half million dollars. He was able to raise one and a half million dollars from grants, foundations and donors, and the funds currently at his disposal are sufficient for only thirty patients. I got annoyed. Because of a shortage of one million dollars, 18 MS patients will not be in able to be on the trial?

“My body was burning when the professor told me that three people had already started the experiment and my husband is not among them. Without thinking twice, I told him, ‘I’ll get you a million dollars’. When the meeting was over, I asked myself how I could commit to a million dollars. On the other hand, I said that if this is what is needed to get Arie on his feet, this is what I’ll get.”

Sarit was underway. “Arie and I are two kids from Beersheba. We do not know people with money, and at first I was afraid that I undertook too great a task. I called Naomi Stuchiner, who founded Beit Issie Shapiro, and I asked her how to organize such a philanthropic campaign. She showed me a direct question ‘If Arie is not in the trial, you’re not going on this journey?’ I took a deep breath and I told her, ‘Arie is sitting beside me in the car, you’re on speaker, and I telling you we go on this race even if Arie won’t be part of the experiment’. I believe this helped us to break through”.

Sarit spoke with businessman Oren Bar-Gil, a partner in fashion “Hoodies”, “Carolina Lemke”, “Toften”. “Oren immediately entered the picture and enlisted the advertising agency Reuveni-Pridan, that brought the idea of ‘My Anchor’. We have created in China 30,000 colorful bracelets with a tag attached. On the front it says “My Anchor’, and in the back – ‘thank you for being the anchor of MS patients. Upload your photo with the anchor and tag it with the people that are the anchor in your life.” The bracelets will be sold in two hundred points of sale of Bar-Gil’s partner fashion chains, at the price of 10 shekels a bracelet. “

What makes you believe you’ll be able to sell 30,000 bracelets?

Sarit smiles and opens the campaign’s notebook. She already has 60 celebs on board. Ania Bukstein, Dvir Benedek, Ron Kaufman, Shiri Maimon, Ruslana Rodina, Yael Goldman, Maya Dagan, Omer Dror, and Rotem Abuhav will be filmed this week for TV with “My Anchor” bracelets, will uploads the photos to social media networks, and simultaneously uploaded TV video in which they will relate to anchors in their lives. At the same time she launches a crowd funding campaign, and invites the public to buy and donate. “Any amount of two hundred thousand shekels will get another patient into the trial,” she explains.

This is not an eye infection

Their daughter Shachar, 10, did not want to be an only child, and five years ago they gave birth to her brother – Rani. The happiness was perfect. Three weeks later Arie complained about a lack of clear vision. “I thought I got an eye infection”, he says. “The eye doctor who examined me ruled that the problem was neurological, and referred me to the emergency room. They examined me, they gave me steroids that helped, and asked me to come back in three months. When I came back, I did an MRI, and the doctor told me I was suffering from multiple sclerosis.”

Just like that? Plain and simple?

“During the first hospitalization, when Arie told me, ‘This is something in the head’, I had no idea what they suspect”, adds Sarit, “and also I didn’t have time to ask. I had a month-old baby in my hands. Why to think of trouble? When the diagnosis arrived, the term ‘MS’ was not foreign to my ears, but I did not know much about the disease.”

Arie remembers in that meeting he presented the doctor with a few basic questions. “The doctor explained it is not known what the reasons are for the emergence of the disease, which is the most common neurological disease among young people worldwide, and eighty percent of them will be affected in the lower limbs. He gave me a medication that’s supposed to postpone the next attack and that’s all.”

The second attack took place on January 22, 2013, the day of the elections. “We made arrangements to meet with my sister and her family”, says Sarit, “and suddenly Arie called me from the bedroom and said, ‘I can’t get up’. He explained, ‘I can’t move my legs’. It was horrifying.

“My sister came immediately and took the children. I called men who helped me to get him up. When Arie wanted to go to the bathroom and I saw him take a step and another step, supporting himself by the walls, I realized that the disease entered our home. Until then, most people did not even know he was sick. The damage caused in the second attack was very significant and we had to tell everyone”.

What did you tell the kids?

“Rani was born into it”, says Arie. He was three weeks old when it started. Rani never experienced a father who picks him up and walks with him hand in hand, adds Sarit. It was more difficult for Shachar to digest the change. Today, all the children in Rani’s kindergarten compete for the chance to get a ride on my mobility scooter,” Arie smiles.

“At first Shachar preferred Arie won’t come to her school with the mobility scooter, but I”, Sarit choking and tears in her eyes, “said to Arie from the beginning: ‘I’m not ashamed of you and not of your scooter. I’m proud you’re with me and next to me. The scooter is just a utility. You remain the same person and the man I fell in love at the age of 17, you’re just not walking.”

Unable to operate a Microwave

Arie, in turn, does not deny moments of crisis. “Every moment is a crisis, and I am the last to say that every crisis is an opportunity for growth. This bullshit doesn’t work on me. If I lived alone, I would be diving deep into depression. But I have an incredible family, and I’m wrapped up in a network of friends that will not let go, so who am I to complain? it can always be worse”.

It was the acceptance of the situation and the presence of the scooter, that helped the family to establish a new routine. Every morning, before Sarit leaves for work, she prepares lunch. When Shachar comes back from school, she heats the food for her father, who returned home from his daily visit to the synagogue.

“I do not fast on Yom Kippur and eat bread during Passover, but I love the depth of the religion”, he explains. “Every morning I go down with the scooter to the bus stop, the driver lowers the rump and I go to a synagogue for two hours of study Talmud and the Bible”.

“Arie must keep his brain active”, adds Sarit, “and sophistry Talmud do him good. But since the illness came into our house, I felt I could not cope with the helplessness of ‘nothing to be done’. I thought to myself that it’s impossible that in the whole wide world there isn’t a clue, the start of an experiment, something that will lead to some relief”.

A few weeks ago Arie started the early stages of the Hadassah MS trial. “I entered the program after it was proved that I am still able to do a few steps, and that means we still have something to rehabilitate. That’s the criterion. Under general anesthesia they took nine vials of bone marrow from both sides of my waist. A month ago, they returned to me two dosages, one to vein and the other in lumbar puncture to the spinal fluid, because the purpose of the experiment is also test which return method is more effective. In six months I will go through this process a second time as the experiment consists of two injections”.

A month later, do you feel any change?

“No”, he replies. “This is clinical trial and nobody knows what was in test tubes I received – stem cells or a placebo – and what I will get later. In any case I remind myself that the experiment doesn’t cure the disease for now. It does not reprogram the immune system, but a dramatic discharge of stem cells can to stop the deterioration and renew some of what was destroyed, and thus resume functions the body no longer makes”.

The optimism of the couple strengthens them also in the other battles they experience. “the national insurance  doctor decided that if I was able to walk a few steps with a walker at home, means that I am mobile,” he says. “So what if I depending on my 10 years old daughter to warm my lunch because in my scooter I am not able to bring a dish to the microwave? The doctor also stated that if I am not incontinent, I do not qualify for help. We appealed twice and I gave up. I’m not ready to go again through this humiliation. In another battle we won. The national insurance wanted to give me a car the size of a matchbox that has no place for the scooter. At the end I got a mini van”.

“We are not looking at what we don’t have, but what we do”, says Sarit. “The children gain a lot of time with their Dad. We taught them the four of us is strength. If I have the opportunity to work around the clock to not only help my husband, but also millions of other patients, this is a great privilege”.

“There is a sense of a war of attrition”, Arie added. “Many of the patients become discouraged along the way. You can not survive the bureaucracy if there isn’t someone running with you at your side. Sarit is not a bulldozer that moves mountains. She is a woman who sits at the foot of the mountain, talk to it, tells it, ‘Let’s go for a walk’ and the mountain moves. Fact!”

Kindly translated from the Ivrit by Tammy Schwarz.


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