Werkt doneren via de pagina niet?
Gebruik dit IBAN nr: NL72 RABO 0372 1369 31
T.n.v.: E.G.E. Tazelaar
Hello, my name is Marcell, and I am a twin boy of 3 years old. I love riding my bike, playing football, and using my toy trains and cars. I love to eat kinder chocolate and fries. Oh yes, I also like to watch Bing and Peppa Pig.
At first sight, I might seem like I am a happy boy, with lots of energy and a big smile – you know, we toddlers are all the same! Still, there is something special about me.
When I was born, I was diagnosed with a very special condition: Fibular Hemimelia (I can’t even pronounce that).
This condition has already a big impact on my life now and for the coming years. Currently, I don’t really worry about it, but I know my mom and dad are very concerned.
In case donations are not working via this page, please use this IBAN nr: NL72 RABO 0372 1369 31
Account name: E.G.E. Tazelaar
Fibular Hemimelia (F.H.) is a very rare birth defect, it occurs only in 1 out of 50.000 babies. It means that a fibula is missing in either one or both legs.
In my case, I don’t have a fibula in my right leg. Also, my right foot is small, has only four toes and my ankle joint has not developed properly (F.H. type 3).
There is no real cause for this condition: it can be an unnoticed infection during the pregnancy, a temporary problem with the blood flow during the development of the embryo or just plain bad luck. It’s like winning a jackpot you really don’t want to win.
Both my feet and legs do not grow at the same rate, which in time will cause a big difference in length. The hospital, where I’ve already spent a lot of afternoons, estimated that the total difference between both my legs will be around 20cm, when I am an adult. Also, I can barely move my ankle and my foot is turned outwards.
But still, my mom and dad fear that in a worst-case scenario, my right lower leg might have to be amputated, for example if I can’t really use my foot and ankle anymore.
Personally, I don’t let it get to me, I’m still that same happy and smiling boy. Besides that, I would like to support our own hospital, so other kids with Fibular Hemimelia get the same opportunities. So, I have set up (with a little help from my mom and dad) my own foundation, more info about this will follow soon.
In the past years I’ve spent a lot of time in hospitals, but my journey has barely begun. Do you know what still lies ahead in the next couple of months and years?
Honestly, I really don’t know but I think it will take a long time before my foot and leg are fully healed. And I’ve heard mom and dad whispering that it might take a lot of surgeries:
1 - SUPER-ANKLE procedure: if I understand mom and dad correctly, this surgery will give me a brand-new ankle. This way, my foot will be able to stand nice and straight, which is very important.
If all ends well, I will be able to walk, run and move in a normal way. But there is a downside: if not performed correctly, I risk losing my lower leg.
2 – LEG-LENGTHENING (3x): To make my right leg longer, the doctor will have to perform a long surgery. First, they will break my leg and then they will attach a kind of climbing rack (Ilizarov frame).
This will help keep my leg nice and straight so that it can heal properly. During a period of 4-6 months – and with the help of some special screws – my leg will be made longer, about 1cm every month.
You might wonder if I have been able to walk properly these past couple of years? No, not without support, but when I am using my special "shoe" it is possible, which makes my legs almost equally long. This special orthopedic "shoe" is temporary and needs to be custom made each quarter until I get the first surgery.
I might just be a small kid, but I’ve already made a lot of trips together with my mom and dad to visit doctors. I will even be flying to Poland soon to visit a very famous doctor, who knows everything about Fibular Hemimelia ... exciting!
After all these visits (with a lot of emotions), I have two options to heal my leg and foot:
Option 1 => I ask my doctors in our hospital to try and heal my leg. It is a good hospital with friendly doctors and nurses. And I know they can make my leg longer, because I’ve seen other kids walking around with that climbing frame around their legs.
But I am worried about the SUPER ANKLE-procedure. Fibular Hemimelia is very rare, and I know that my doctor does not have a lot of experience with it. This procedure is very important and could allow me to walk and move in a normal way. If it fails, I might lose my little lower leg, due to amputation.
Option 2 => My mom and dad have a better idea: they want to have the SUPER ANKLE procedure performed by the doctor which I am going to meet in Poland: Doctor Dror Paley.
This doctor lives in America and is the best doctor around for Fibular Hemimelia. He has a special hospital in America and in Poland.
So that’s where I would like to go to get my new ankle. I am sure that Doctor Paley will do a good job. Then I can come back home to have my lengthening done by my doctors in our hospital. It’s like I have my own team of superheroes who are helping me!
Unfortunately, such a new ankle procedure cost a lot of money. Mom and dad think that this SUPER ANKLE surgery might cost up to € 80.000. So that’s why mom and dad created this crowdfunding page to try and raise € 70.000 for my new ankle.
If I bake a lot of cakes and sell them in our neighbourhood, maybe I can raise the rest of the money to visit Poland.
If all goes well, I can go to Poland at the beginning of next year and come back home with a brand-new ankle, hurray!
Mom, dad, Máté (my twin brother) and I, thank you for any contribution that helps us to get there.
We really hope it will be a success…
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more