Our son Ekrem was diagnosed in May 2017 with a rare genetic disorder called: Leukoencephalopathy with cerebral calcifications and cyst (Labrune syndrome). This disorder consists of cysts, calcification and white matter in the brain. There is currently no treatment for this disorder and unfortunately it is a degenerative disease. There are less than 100 known cases in the world with Labrune Syndrome.  Because of the rarity of this disorder, pharmaceutical companies do not allocate any funds for research. 

Ekrem just turned 13 years old, and we are celebrating the fact that he made it to this milestone birthday. If you ever meet Ekrem, you will see just how special he is. He has a heart of gold and his smile lights up any room. He is adapting well to the changes his body is going through as this disease progresses. His speech has been greatly impacted and it has become much more difficult to understand him. Instead of giving up, he will work to try to help you understand him. He is losing the ability to walk, and now requires orthotics for both feet to help him. He is excited to wear them because he knows they help him walk and run- a very important skill for someone who dreams of being a football player! Ekrem is the first person to give someone a hug who is feeling sad, and he loves to cuddle. He brings so much joy to his family and anyone who knows him. He loves to laugh and have a good time.

Ekrem is very excited about raising money for treatment options or even possibly a cure for Labrune Syndrome. He wishes there was a cure and wants to help other people who are diagnosed as well. We are working with an amazing team of doctors and researchers at Children's National Medical Center in Washington DC. 100% of funds raised will go to support both clinical and laboratory research-based investigation into the clinical presentations and mechanisms underlying neurometabolic diseases, including Labrune Syndrome, and development of new therapies to treat these disorders.

We ask that you please help us raise the money needed to research Labrune Syndrome so kids like Ekrem can have a chance at a normal life. All they want is to be able to do all the things that other kids can do. You can help make that possible.

THANK YOU TO OUR SUPPORTERS!❤