Third time lucky!
My son Alan has a rare and complicated leg deformity that he needs a third surgery at The Paley Institute in the US. Two previous surgeries took place there as well. The Polish healthcare system funded them. This time there is no chance for this to happen...
We have been fighting for Alan for the last 16 years. “The child has one shorter leg, but we are not sure what kind of defect is this, but it's only a leg. You should be happy that this isn't another severe disease, which could happen to your son" - this is what I heard straight after giving birth to my son. I wasn't ready for this, especially that all tests during pregnancy were fine.
Cut off, remove, amputate….We drove all over Poland, half of Europe and we heard the same words in every place. All the best doctors on this side of the Atlantic were unanimous - “There is nothing we can do with this leg, this case is too rare and too complicated. We cut it off, prepare a prosthesis and he will be able to walk and jump. This is the best solution." I couldn't accept it, surely there must be another choice.
There were moments of being defeated; we were trying to tell Alan that one day doctors may need to remove his leg. As a small boy he could not understand that this was the only solution. He was saying that he loves his "little" leg and he wants to keep it. I was looking into his sad eyes and I knew we had to look elsewhere for help. Luckily the help finally came- from across the ocean!
Dr Dror Paley from the Paley Institute in Florida explained that Alan’s case happens once in a million births. But, most importantly, he knew how to treat such a defect. Finally we were given a chance, we were given hope, that modern medicine will save our boy’s leg.
We have taken him to the United States twice already and both surgeries were funded by Polish health care. Dr Paley has lengthened Alan’s tibial bone by 16 cm; he improved the functionality of the knee and ankle, as well as moved the tibia bone back to where it should be. The second trip to the USA would not have been possible without the support of donors who helped us to pay for a multi-month stay across the ocean.
Since then, Alan’s leg, which he wouldn’t have had by now without our determination, has been growing with him. It is almost an “adult” leg, but it is still 20cm shorter than his healthy leg. Dr Paley, is the only doctor who gave us hope for a full recovery that Alan will one day will have two equal legs.
In the future, my son will be able to function like his healthy friends, but he needs third surgery in 2019’. We cannot stop halfway and he is still growing. Unfortunately, it's all uphill from here.
We cannot rely on polish healthcare system as they haven’t been approving any requests for the last few years, claiming that this type of defect is curable in Poland. We have many good specialist in Poland, who learn new methods of treatment, but if I had listed to them at the beginning of our journey, my son would have been without one leg and today I wouldn’t have been collecting money for lengthening of his tibial bone, but for new prosthesis. Alan has a chance to walk on his two legs and the only person who has experience in such cases and can help him is Dr Paley.
Unfortunately, the price for his treatment is out of this world; absolutely out of the reach of ordinary people like us.
That's why I'm asking for help once again. I cannot tell Alan - "Sorry, but your dreams cost too much. Enjoy what you have ...” I would do anything to raise this money for his surgery. His American dream of a healthy leg continuous for now. Please do not let him have to be brutally awakened.
Klaudia - Alan's mom