Rayyan, Our Strong Hero(With A Rare Disorder.

My nephew who is 7 years old this year, has Klippel Tranaunay Syndrome with possible venous malformation in the right sacral nueral foramina with extension to rectal wall with intermittent per rectal bleed(Resulting in anemia) since at young age. He has had colonoscopies, band ligations and multiple Sclerotherapy done amongst other surgeries. He has also gone through a lot of bloods transfusions and iron transfusions. These surgeries are as recent as 9th and 16th of July 2019 and there is more operations needed.

Currently there is no cure for this disorder and he has to go through operation after operation(till the next relapse) just to reduce the pain. We are now awaiting a major operation that involves quite a few high risks.A few of them involve is hardening of the lungs, foot drop in the right leg(not able to walk properly), skin burns, thromboembolism, and nerve injury. The right leg has abnormal veins growing and it has gone up to his pelvic area and they will need to 'burn' off the veins asap.. As of now,the lumps on the right legs is getting bigger and more visible. Fro that,He is not allowed any physical activities or strenuous ones.