Naheim's Transplant to Cure Sickle Cell Disease

Naheim is our 9-year-old son that was born with sickle cell disease. He is the most caring, bright and giving child that I know and I am not just saying this because he is my child. Like so many other illnesses, sickle cell also makes you look at life differently.  Naheim is so selfless, that 2 years ago on his 8th birthday, instead of a party he chose to volunteer at Nemours Children’s Hospital for the Cancer and Blood Disease Hero’s Parade.  Though he chose to be The Black Panther, the real hero was under that costume, Naheim!  To see my child give so much of himself at the age of 8, I can only imagine what he will accomplish as he gets older.❤️

Unfortunately, along with sickle cell disease he has Moya Moya disease as well. While sickle cell disease is not widely known, Moya Moya disease is just as rare. Sickle cell is a lifelong disease mostly found in African Americans that affects the hemoglobin, which is the protein that carries oxygen through our bodies. Normally the red blood cells are round and flexible in order to flow through the vessels smoothly. With SCD (sickle cell disease), the red blood cells take on a crescent moon shape with no flexibility and can block the blood flow to major organs, muscles, and bones. This blocked flow causes excruciating pain known as a sickle cell crisis (which can last from hours to days), stroke, vision problems and worse. Unfortunately, in Naheim’s 9 years he has already experienced stroke, 2 major brain surgeries (possibly another) and more than enough pain crisis.

The only cure for sickle cell disease is a bone marrow transplant which we are needing to do asap to prevent further complications. On top of all that he was also diagnosed with Moya Moya disease, which is narrowing of the arteries in the brain. With the bone marrow transplant we are hoping to prevent further complications.

I want to give you a glance inside of the life of someone with sickle cell. Could you imagine yourself not being able to OR telling your child “No” to getting in the pool on a hot day or never experiencing a family beach day to build a sandcastle? How about saying “no” to building a snowman, having a snowball fight, or making snow angels on snow days? “No” to recess with the other kids on days that are too hot or cold, “no” to sports because he will try “too hard” to keep up with the other kids and must listen to his body. What about missing out on family trips, outside reunions, birthday parties, field trips, water parks or Disney like all the other kids his age? “ No” is the answer to these because you have to avoid things like wearing wet clothes, chills, sudden temperature change, stress, and exhaustion to avoid bringing on a painful crisis. Just yesterday he was spraying water on his face and letting the wind blow on his face while riding in the back seat pretending, he was at a water park, lol. So, to make the most of it, we all “hopped on the ride”.  At the time it was funny, but also bittersweet.

Naheim has a rare opportunity that not many others with SCD have and that’s a matched sibling donor for a bone marrow transplant. Our daughter Nevaeh was born sickle cell free and matches Naheim’s HLA (Human Leukocyte Antigen) which means she can donate to her brother to help give him an opportunity to live life and not feel secluded. This bone marrow transplant will give Naheim a chance to spend a day at the beach, theme park or just to go outside and take full advantage of a snow day! A chance to live without limitations!

Donations raised will go toward Naheim’s current and future well being such as:

-Transportation to and from all appointments for both children

-Necessities to help get Naheim through daily routines

-Any additional physical or occupational therapies that are needed

-Home expenses while out of work (Mortgage, utilities, etc.)

-Home schooling and online education