The boy who suffered enough... Less and less time to save him from permanent disabilyty

If my son does not undergo surgery, all efforts will be in vain. We cannot escape his leg amputation any more, we will not avoid disability…How can I stop myself from crying if I know my son may suffer for his whole life? Treatment of Rayyan was supposed to start last September. We hoped the surgery would be funded by NFZ [National Healthcare Fund], but unfortunately… It’s been a year and my son still hasn’t underwent this necessary surgery. Today, I know we must pay for it by ourselves, but where do we take such amount from? The rescue of my son from permanent disability costs one million Polish zlotys…

It was exactly 5 years ago when my world was to be changed by the birth of our son. I couldn’t wait to see him, to hug him…Unfortunately, this wonderful moment was destroyed in one second by tears, pain, and fear – the leg of my son was strangely bent and much shorter! What did it mean? Why my son, Rayyan, was born with this defect?

Then, I was informed that the cause was a very rare defect to the bone system – he had no tibia. It is called Tibial Hemimelia – TH. What is more, my son has no knee joint, has osteophyte and clubfoot. The defect hadn’t been found before, even though it could have been. However, even if I had known about it before, I would have not changed my mind – I wanted my son from the moment I found out about pregnancy.

After a year I tried to comfort myself “Isn’t it that medicine gives so much possibilities nowadays? Rayyan can be healthy!” But when I heard from the doctor: “We need to AMPUTATE your son’s leg” everything fell apart. I barely remember it. It was like a nightmare that I wanted to wake up from. I cried for so long that no tears were left…The only thing left was the feeling of powerlessness, weakness, and this question: Why?! I was only thinking about how to help my son and save him from suffering…

My head was spinning with thoughts. I could not agree to powerlessness of doctors. The fight took us more than 1.5 year and we said “NO” to amputation! At the beginning of May 2015, we received a letter from the National Healthcare Fund – it was decision to provide us with funds for first surgery in USA. It was unbelievable, but real! Thanks to support of wonderful donors and help from the National Healthcare Fund, we were able to have the surgery performed, during which Rayyan’s knees and feet were reconstructed and les extended. On 15th September 2015, we started a long trip – the trip of a lifetime! It was not only the chance to save the leg, but the chance for Rayyan to walk, to run! The persistence in pursuing our goal and a huge support from people – both financial and spiritual – helped us not to lose hope in most difficult moments.

We were happy then, though we already knew that there was one more surgery ahead. Again, we hoped for the National Healthcare Fund – it was the continuance of treatment that could not be stopped, wasn’t it? Unfortunately…We are still trying, but the success is almost impossible. It turned out we may count only for ourselves! We’ve been stabbed from many sides, many obstacles were put in our way that we had to overcome…The fight is even more difficult as there is only me, the mom, and Rayyan, who wishes so much to be simple healthy, left on the battlefield…

The price estimate of the whole therapy in USA is enormous, amounting to about one million Polish zlotys! The worse is that we are running out of time – the surgery was supposed to be performed a year ago! The condition of the leg worsens a lot, especially knees require urgent surgery so that the mobility could be returned. It was three years ago when doctor Paley reconstructed the knee which was not even there. Only he knows the leg of my son best, and I trust him – it was not only that he was the only one who gave us hope, but he also fulfilled all his promises!

First stage of my son’s treatment included 3 serious surgeries performed during his 10-month stay in the clinic of doctor Paley in Florida. Thanks to the surgeries, his leg was saved, and today, he is able to walk thanks to orthosis and special footwear on a platform. But Rayyan is growing and he still needs treatment. Spine defect, which in addition to the leg defect and the way Rayyan walks, will be getting worse. That is why, the surgery is a priority and the only chance for my son. The chance that costs a fortune and waits for us on the other side of the pond…

I have only one dream – I want Rayyan to be able to enjoy his childhood same way as his peers. I want him not to cry from pain and sorrow when he sees his friends attend football classes and he cannot. I want him not to have tears in his eyes when he points at the bicycle and I have to tell him with lump to my throat “it is not for you my dear”. I want his spine not to bend taking dreams about ability away but bringing suffering instead… The surgery in USA gives us 99% chance that Rayyan will be able to walk independently without this huge ballast, and a chance for his spine to be fully functional! Doctor Paley can perform surgery at any time. We are only limited by money, which we do not have…

Please, do not allow my son to lose hope. It is such a horrible pain for a parent to know that there is a chance for a child but there are no sources to buy it. Thanks to your help, we may save his leg, spine, and Rayyan’s life from permanent disability! That is why, I would like to ask you very much for help…

Olga, Rayyan’s mom