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 .