Eddie Michael Whitaker-Russell

Eddie Michael Whitaker-Russell

Eddie was diagnosed with Hunter Syndrome in May of 2008. Eddie and his mother Monique live in St. Petersburg, Florida and had to leave everything to move to Durham, North Carolina for 9 months so that Eddie could have an unrelated cord blood transplant and a second chance at life.

Hunter syndrome, or mucopolysaccharidosis II (MPS II), is a serious genetic disorder which primarily affects males. This disease interferes with the way that certain cells and organs function, leading to symptoms like distinct facial features, a large head, and an enlarged abdomen. People with Hunter syndrome may also experience hearing loss, thickening of the heart valves leading to a decline in cardiac function, sleep apnea, and enlargement of the liver and spleen. Range of motion and mobility may also be affected. In some cases, central nervous system involvement leads to developmental delays and nervous system problems. Not all people with Hunter syndrome are affected by the disease in exactly the same way, and the rate of symptom progression varies widely. However, Hunter syndrome is always progressive and life-limiting.

Two of the most significant areas of variability concern the degree of mental retardation and expected life span. Some people who have Hunter syndrome are not mentally retarded and live into their 20s or 30s; there are occasional reports of people who have lived into their 50s or 60s. In contrast, others with Hunter syndrome develop severe mental impairment and have life expectancies of 15 years or less.

Eddie is now home and adjusting very well. He still must receive intravenous immunoglobulins (IVIg) monthly, but his health is progressing. Eddie began attending first grade at John M. Saxton Elementary and also enjoys playing with the Build-A-Bear dog he created while at Duke University Hospital in North Carolina.

Eddie and his family are currently struggling with transplant related expenses and the many symptoms of Hunter Syndrome. To help Eddie continue his fight at a second chance at life, the Whitaker-Russell’s have teamed up with The Bone Marrow Foundation to set up a special One-to-One Fund to collect donations on his behalf.

Click here to contribute to Eddie’s One-to-One Fund

Or you can send a check, payable to The Bone Marrow Foundation.
Be sure to include Eddie’s name on the front of the check.
Send check to:

The Bone Marrow Foundation
515 Madison Avenue, Suite 1130
New York, New York 10022