Recently we received a letter from Seynab Mohamed, the mother of Nasiib Mohamed an adorable toddler born with a genetic disorder called WWOX.  It is a very rare disease and there is no medical intervention or cure for WWOX related syndromes. Medications are given to relieve the symptoms of the disease. These symptoms are seizures ,developmental delay, low muscle tone, visual impairment, metabolic problems, lack of coordination, and many more.

Nasiib was born in Sweden, Stockholm and moved to the USA last year. His journey began when he was 5 weeks old, and they were in the hospital with his big sister who was sick from the same genetic disorder. Nasiib had his first seizure on a Monday morning when the family was watching doctors and nurses treat his sister from a long episode of seizure. It was a difficult moment for the family.  After a few hours the doctors had the awful talk with my husband and I about our daughter having only a few hours or days left to live. Meanwhile, they started testing Nasiib and giving him medications for the seizures. They had two children in two different rooms next to each other. It was the hardest week of our life.. We lost our daughter that week. Luckily, my husband came in time to spend a few hours with her before she left us.

Our story with a genetic disorder is a tough story, but it felt like I should just start from the beginning on how hard saying goodbye to our angel was for us. . She gave us two beautiful years and Nasiib had a few weeks with his sister, and we are grateful for that. Now back to Nasiib, he has the best team with him since we all had been through this before. We knew what medication to give him and all the steps to take to give him a better chance to fight his symptoms.

After a few months we moved to the USA and started our journey here as a family. One thing we hate about this genetic disorder is that there are not many doctors that have heard about it before, so we will always get the same questions over and over again. As his parents we have to work hard for him to get the best care he needs and get a good team to work with us, So we can give him the best care in life.”

Reading this family’s journey is so raw. It’s hard to understand the challenges they face. And still, they are determined to persist in finding the best care for their son. Part of that care includes the equipment and tools he needs to live his best life.  Right now, a communication device and apps that can be used with his wheelchair would do so much to help determine his wants and needs. Variety KC understands how critical these types of resources are and our generous partners will make sure Nasiib gets the device he needs.  Please help Variety to help other children like Nasiib – it’s so easy, simply donate at www.varietykc.org/donate   Thank you!