Marfan Syndrome Fight – Story of Alice
Alice is currently 6 years old. She was pre-diagnosed with Marfan syndrome at birth; when she was 2 years old, we ran a genetic test in Israel that confirmed the diagnosis. We were very worried at first, but, to our great relief, our concerns were mostly unfounded.
Now that we know this condition is very much treatable, we try to be optimistic and share the positive energy with Alice. I think she really benefits from it. We can’t stress enough how much the Israeli doctors have contributed to creating this positive atmosphere – their cheerfulness and professionalism are truly unmatched.
Our first trip to Israel was also because of Alice’s health issues. She had trouble with her genitourinary system: we would constantly go to clinics in Moscow with reoccurring pyelonephritis, but the doctors couldn’t pinpoint what caused it. That’s why we decided to go to a Tel Aviv hospital to seek medical help from a famous Israeli pediatric urologist. Unfortunately, the staff there didn’t treat us the way we expected – they were quite unhospitable, showed very little in the way of responsiveness and would always find excuses to finesse more money out of us.
We had decided to switch hospitals, this time choosing Sheba. This was a great call. Now, because Alice needs to be monitored by a cardiologist and an orthopedist, we go to Sheba several times a year.
At Sheba Medical Center, Alice has undergone a relatively serious scoliosis correction surgery. It was carried out via the MAGEC System by Dr. Caspi – now we always come back to him for the frame lengthening procedure. MAGEC is a godsend: every time the frame needs to be readjusted or lengthened, MAGEC allows to do it non-invasively, with a magnet. It saves us from having to resort to surgery and allows to readjust the frame setup on the fly.
I personally feel that it’s a bit early to make any conclusions on the treatment results. Alice is still in for several surgeries: the frame will need to be swapped out for a bigger one as she ages. I am very pleased that we were able to keep the scoliosis in check – considering the severity of the condition, it’s a great result. Dr. Caspi thinks that after the next surgery, the backbone will finally begin to straighten out.
Because Sheba provides medical services of exceptional quality, we always recommend it to our friends and colleagues. We are very grateful to our doctors for their professionalism, experience and consideration.
Meeting up with our medical coordinators is always a pleasure, especially with Milana – she knows how to put us at ease. Sure, there are some tough moments: surgeries, exacerbations… But thanks to the support and care of the medical staff at Sheba, we can get through times like these in one piece and with some optimism to spare, and this alone is worth a lot in my book.