and You are my hope
Hello, my name is Marcell, this cheerful, smiling boy. When I was born, I was diagnosed with a special disorder, Fibular Hemimelia, which means my fibular bone is missing in my leg. For this reason, my right leg is much shorter, I can barely move my ankle, and my foot is turned outwards. Now, I’m about to have the most important surgery of my life, and I need your help.
About my disorder
What is it?
Fibular Hemimelia is a very rare birth deficiency that affects 1 in 40,000 children. This condition means that the fibula is partially or completely missing in the lower leg. In my case, the fibula in my right leg is almost completely missing. Also, my tibia is inclined, my right foot is too small, has only 4 toes and my ankle joint has not developed properly (this is Fibular Hemimelia type 3), so I will never have an outer ankle.
What causes it?
The exact cause of this abnormality is unknown. It can be either an unnoticed infection during pregnancy, a temporary circulatory disorder during embryonic development, or simply bad luck.
What's waiting ahead?
My legs are not growing at the same rate: there is already an 11 cm difference in the length of my legs, and this difference is going to get bigger and bigger. In the hospital, where I go almost every afternoon, the discrepancy is estimated to be 20 cm for my adulthood. I can barely move my ankle and my foot also has an outward twist. Mom fears the worst – if I can’t use my leg and ankle anymore, they might even amputate my lower leg.
I’ve spent a lot of time in hospital over the years, but much of the road is still ahead of me. Do you know what treatments are waiting for me in the coming months and years? Honestly, I don’t, but it will take a long time for my foot and ankle to fully heal. Mom and the others are whispering about a lot of surgeries.
The superankle procedure
If I understood what Mom said, I would get a whole new ankle with this surgery! This would allow my feet to stand nicely and straight, which is very important. If all goes well, I will be able to walk, run and move properly as well. But there’s a little snag: if the surgery isn’t done well, I’m risking my right lower leg.
In order to make my right leg longer, the doctor must first break my leg and cut the bone. Then they place a lengthening device (Ilizarov frame) on my leg, which will be on for 6-7 months. With the help of the device (and a good many pins and wires, brr) my leg will grow 5-6 cm in the first 3 months, then we’ll wait for my leg to ossify.
I need You too
I may be little, but we have already travelled many, many times with my mother to meet different doctors. We will soon be flying to Poland to visit a very famous doctor who knows everything about Fibular Hemimelia! After many encounters, I seem to have two options left:
I ask the doctor at our hospital to try to heal my leg. But I’m really scared of the superankle surgery! Our doctor and the hospital are both very good, they are really nice to me. But Fibular Hemimelia is a very rare condition and unfortunately they do not have the right professional and instrumental background to ensure that the surgery, the most important surgery of my life, with which I could walk and move normally, surely succeeds. If it fails, I may need to have my right lower leg amputated.
After my mom’s extensive research, we decided we wanted my superankle surgery to be performed by the doctor, who I’m going to meet in Poland – Dr. Dror Paley. He is an American physician who is the best in the field of Fibular Hemimelia. I really want to get my new ankle at his special hospital in Poland. I’m sure Dr. Paley will do a great job! Then the leg lengthening would be done by our doctor at the hospital at home. It’s all like I have my own team of superheroes!
Sadly, this surgery costs about 140,000 euros
Together with my mother, we really want to do everything we can to raise the money for this first and most important surgery. Plus, we are running out of time as this surgery is most effective when it’s done by the age of 3 at the latest (which I’m going to be now on 24th October) because my bones start to ossify permanently.
If I could get to Warsaw to this surgery in January, it would be my first huge step on my bumpy road towards adult life, which I could take with a beautiful and corrected foot and a pair of identical shoes! Will you help me?
Difficulties don’t hold me back, but make me fight.
We created this fund for several goals in the long run:
Volunteer helper, best brother
Volunteer helper, granny
Volunteer helper, mommy
Volunteer helper, step-daddy
Would you like to see my everydays, how I can walk and move with my leg?
I got a special lengthening shoe (orthotics) for my leg a long time ago, with which I learned to walk, run, and misbehave a little, and there’s no week without physiotherapy either. For everything else, follow our Facebook page!