Nikki and Coulter

I am posting for my son, Coulter who battled DC for 6 1/2 years. Coulter began showing signs at 18 months. He was not 'officially' diagnosed until he was around 5. We are from North West Georgia and we visited many doctors, but finally found Doctors at the NIHr. Alter in Baltimore. Coulter did not have the DC gene but did have shortened telomeres. He had all the classic skin abnormalities as well as platelet dependent and required red cell transfusions prior to his bone marrow transplant. Coulter was also taking Anadrol....I saw another patient posted that they had been prescribed Anadro. This seemed to buy us some time. Coulter went to Cincinnati Children's Hospital for his bone marrow transplant the day after Christmas 2004. Cincinnati was the only hospital that would take him for a transplant. His brother was an exact match. He fought long and hard for over three months before he passed away. We are of course heartbroken. However, I just feel like there must be something we could do to continue fighting in his honor. He was so very brave....as many of you must be.
Nikki

The following is a response to Nikki’s posting:​​

Nikki,
After reading your story, I have cried many tears for your family and Coulter and at the same time, I feel myself saying over and over" Please God, don't take Levi". I wish I could correspond with you some more about Coulter's life and his story.
Lily Jean