Please help Alex get a life-saving stem cell transplant to stop his Multiple Sclerosis! We are planning to travel to Israel in August to receive this miracle treatment at Shaare Zedek hospital in Jerusalem. We need your support to make it a reality!
It was a day like any other when Alex realized his parking meter was about to run out and he needed to run to pay it in time. Only this time, as he tried to run, his legs wouldn't cooperate. We realized that something was definitely wrong, and made an appointment with his doctor. After several MRI's, the diagnosis was unfortunately clear - Alex had Multiple Sclerosis.
In Multiple Sclerosis (MS), a person's immune system attacks the fatty insulation layer surrounding their neurons in the brain and spinal cord. This makes it harder for nerve signals to get through, and eventually leads to inflammation that can damage the nerves permanently. Right now, Alex is having weakness and tightness in his leg muscles which makes it difficult to walk, problems with balance and coordination, lowered sensation below his knees, and extreme fatigue. Unfortunately, the symptoms are getting steadily worse.
We had been focused on welcoming baby Natalia and settling in to our new place in the Bay Area when we were first hit with this diagnosis in January. It shook up our entire world. We had to face the uncertainty of how bad it could get. We realized that Alex could lose not only his ability to walk, but even lose sensation and function in most of his body. Our life plan was suddenly irrelevant. And no medication could stop this. The newest drug, Ocrevus, would only slow down the progression a tiny bit, while putting Alex at increased risk of infections and cancer. With limited options, we decided to try a holistic approach. Alex started a diet that has been shown to help people with MS. He started taking supplements and learned exercises in physical therapy to help him with his leg muscles. If his immune system was going to attack his nervous system, we were going to do our best to support his body against the damage. But despite our best efforts and new lifestyle, we can see the disease quickly progressing further.
This is when I started searching online, and found out that a cure for MS does exist! In many hospitals around the world, a treatment called HSCT (hematopoietic stem cell transplant) is achieving success in stopping the disease. In HSCT, high-intensity chemotherapy is first used to kill the person's immune system. Then the person's own stem cells are collected from their blood and get re-injected to restart the immune system with a clean slate. The stem cells don't know to attack the myelin sheath anymore, and the disease progression should stop. It's an extremely difficult treatment, with very real risks of life-threatening complications, and recovery can take many months. But it's Alex's best chance at stopping the disease from progressing further. In the most recent study from Spain, all patients who underwent HSCT and were not significantly disabled going into it, were able to successfully stop the disease! In fact, many patients have even been able to reverse a few of their symptoms. We are so incredibly hopeful that this treatment will be the cure we've been desperately praying for.
Alex can't be accepted for a clinical trial in the US or Canada because they are currently not treating his specific form of the disease. Luckily, there are several clinics in the world which do treat the form of MS that Alex has, and we have chosen to travel to Israel to get treatment at Shaare Zedek hospital in Jerusalem, in just a few months. The treatment costs $120,000 and will take approximately 2 months. Afterwards, Alex will need 3-6 months to get past the toughest symptoms, and then 1-2 years for his immune system to recover completely. Our biggest priority after the treatment will be to keep Alex home and safe from life-threatening infections until his immune system is strong enough to function well again.
Our little family is doing our best to gather together the funds needed for this miracle treatment for Alex, but we could really use your help. Whether it's a prayer, words of encouragement, a facebook share, a small donation, or a bigger one - we would be incredibly grateful for your support!
If you'd like to donate directly to avoid a credit card fee, you can use venmo (Alex's username is alex-rayfiel), or you can send a check to:
1080 Tanland Drive Apt. 101
Palo Alto, CA 94303
To follow Alex's story, like his facebook page here: