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HELLO, I’M AHMET TUNA

Could You Walk With Me?

Hello Everyone. I am Ahmet Tuna. 4 year old little boy from Istanbul. As you may know I am at the very beginning of my life. Although I am very healthy and smart, I have a congenital genetic disease. Because of that I really need your help.

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I just want to Walk

in Medicine they named this genetic disease AMC “ARTHROGRIPOZIS MULTTIPLE CONGENITA’’ which is a rare genetic disease. But I have no idea of this illness as I am still a baby. According to some studies this is a rare genetic disease, or it has some other reasons.

May be the umbilical cord of my mom’s womb. Actually, they have no clear idea, but my disorder has very clear hard results on my small body. My parents have been struggling with my treatment and therapies for the last 2 years.

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About My Ilness

Hello Everyone. I am Ahmet Tuna. 4 year old little boy from Istanbul. I know you are wondering how can I talk but just ignore it. As you may know I am at the very beginning of my life.  Although I am  very healthy and smart, I have a congenital genetic disease. I have serious lower limb deformities. In other  words, my hips, my legs, my knees, and my feet’s joints are so stiff and never was able to move since I was born. Because of these deformities I can’t walk. I can’t stand any more. I suffer from this genetic disorder. So, they all affect my life and my development. Everything  is getting worse to my small body.

In Medicine they named this genetic disease  AMC  “ARTHROGRIPOZIS  MULTTIPLE CONGENITA’’  which is a rare genetic disease. But I have no idea of this illness as I am still a baby. According to some studies this is a rare genetic disease, or it has some other reasons. May be the umbilical cord of my mom’s womb. Actually, they have no clear idea, but my disorder has very clear hard results on my small body. My parents have been struggling with my treatment and therapies for the last 4 years. They try to search for every detail in my treatment. I ‘m a bit naughty boy as you know like the other kids  when my mom tries to therapeutic massage my stiff joints and my muscles that don’t work as normal kids  I can’t stand anymore because I’m seriously suffering from muscle pains. And then I’m really getting angry and trying to escape from it. Because of my situation my father turns to be real inventor in this process. My dad designed a pedal system for me to have fun and have a good time. For instance, when I eat something or doing some activities  my mum puts me  this pedalled special chair, so this is an automatic pedal, and it cycles when my feet wear these .

I  have some operations, 4 months plaster treatments, lots of orthosis, iron shoes those I had to wear 23  hours a day when was 1 year, lots of physical treatments, lots of hospital visits and many doctor’s appointments and so on… Even though I don’t know what is going on in my life I try to catch the life if I can find an opportunity. My story is so long and trying isn’t it?  I’m just 3.

 

And on the way some surgical operations are waiting for me. At first, I didn’t say to you so as not to make you sad, but I have a serious hip dislocation. But my mum and dad decided to wait a bit for this operation  because of the economic reasons and all the operations have negative results from physical treatments. If my parents don’t make therapeutic massage to my feet and legs and my lower parts of my body, they turn to be very stiff joints, in other words they are as stiff as a stone. That means all my efforts go to waste.

 

And now I have some news for you. When my  mother searches some developments of this illness,  she has found out that there is a spine and limb institute for this kind of rare genetic disease and this  hospital is in the USA. And this centre is one of  the most important  hospitals that accepts kids like me. If I can go there, I may have a chance to walk, to run and to  play football like the other kids

In  my treatment and big fight in this way I need your support. Now people call me special needs boy or disabled or some other words, but I don’t know exactly. Just to be normal like you, I have a big fight, although I’m small.

 

I  call for help from all the people who  can hear  me. I will be incredibly grateful to you when I grow up as a healthy and normal boy. And even my parents and my sisters are much more thankful to you than me. So, I offer you ‘’CAN YOU WALK WITH ME?’’

 

THE HISTORY OF MY RARE DISEASE

Because of the umbilical cord surrounded Ahmet Tuna and maybe he has stayed in the same position for months in the womb he was born with these deformities and his legs are on his chest and Ahmet Tuna’ right leg was broken. He didn’t move anymore, and his joints are so stiff and hard. So, these handicaps lead to many deformities on the baby’s especially lower extremities. When I was born like this my mum just saw me for half an hour and the authorities sent me to the neonatal intensive care unit for searching my illness. At the very beginning they supposed that I had Osteogenesis Imperfecta that means glass bone disease but after a while and some tests this idea disappeared. From now on my treatment process has started. Long, hard, and full of hope to me because I’m a strong baby I had passed the first test as soon as possible. After my genetic test it appeared to be that some of my genes changed and they called this mutation so my diagnose is clear enough unfortunately, it is AMC meaning Arthrogryposis Multiple Congenita; a congenital rare disease in this illness joints are curved abnormally and limited movements, so you need and depend other adults to help if you don’t get the right cure. Because it is getting worse and worse.

At first my parents searched and looked the very right doctor and hospital. I said this but they tried a good centre or hospital which accepts me because lots of doctors didn’t accept me because I’m a syndromic baby this means it is hard to find a hospital in this way. So, my plaster process started. For 4 months every Monday I have a new plaster all my lower extremities to have a normal and flat feet and doctors tried their bests to help me. After the plaster period I had achillotomy operation for the relief of my stiff muscles at the back of my feet. Second period: Dennis Brown Orthosis.

It is a kind of iron shoes and about 1kg, but it didn’t affect my positive smiles on my face. I had to wear these shoes for 23 hours. However, one hour still didn’t belong to me. One hour goes to therapeutic massage to my legs and feet. Because of my other problems this shoe treatments didn’t last too long.

Although I don’t want, I have to wear lots of medical gadgets and use many devices for standing and learning to walk and so on…My father designed a pedalled system for my muscles to be getting strong and strong. Besides this my parents searched and started some alternative treatments, Biorezinons cure and some special diet programs for healing and helping my body correctly you know my way is hard and long but I’m small and young and strong I will achieve with the help and support coming from you.

Because of the Covid-19 pandemic I couldn’t take lots of my medical cares at first. If I don’t take my physical treatment one day my joints will go worse and worse, so all my efforts fade away. So as not to go away too much I’m waiting for other surgical operations.

According to searches of my parents there is a spine and lower limb clinic ’’PALEY INSTITUE’’ that can make some critical operations of this kind of kids and they have many positive patients’ opinions .

 

With the help of your precious aid:

– I can go to this clinic which is in America and get the very right and important medical care. ( https://paleyinstitute.org/#/ )

– Operation expenses

– My medical devices which help me to stand My parents must renew them because I’m getting older, so I need the proper ones for my body.

– My physical treatments that I must continue all my life.

– Alternative treatments

– Tests and doctor appointments (all my body is one system so one defect affects one another so all the time I should be checked and under controlled)

4 year old Ahmet Tuna is suffering and needs your help. $ 300,000 needs to be collected

Overall Goal Realization
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