Deion’s Transplant to Cure Sickle Cell Disease

Deion is our 6 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.

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.

The only cure for sickle cell disease is a bone marrow transplant which we are needing to do asap 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? “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. It’s heart breaking to watch your child suffer and not have direct access to the things you need to make them feel better.

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

Donations raised will go toward Deion current and future well being such as:

-Transportation to and from all appointments for both children

-Necessities to help get Deion through daily routines

-Any additional physical or occupational therapies that are needed

-Home schooling and online education

Thank you in advance for all of your thoughts, prayers, and donations ❤️