Follow Kenan's Story by Email

Saturday, February 23, 2013

Report from Pittsburgh: In the Eye of the Storm

Kenan is doing well. Even though he has two copies of the "early infantile" chromosome deletion, something else genetically is protecting him from a more rapid deterioration. He is in stage two of three. There has been further demyelination across the board but the main point is that the disease has not yet spread to his brain stem. Although his apnea will continue to progress (erratic and delayed breathing) his body should be able to adapt in the short term provided it does not have to contend with additional stressors (illnesses). Our main goal at this point is to keep him as healthy as possible. His breathing has been a main source of anxiety so with this information Dann and I have found ourselves relaxing more mentally. In bold letters, Kenan will be with us longer than his original prognosis; case in point to why early identification and research are crucial. Right now, leukodystrophies are a Gordian Knot of complexity, but with each child that is tracked, the puzzle becomes more refined. We are obliged to participate if only to be the decimal of a percentile, the line on a graph or the arch of the curve that will help the next generation of diagnosed children until there are NO MORE.

No comments:

Post a Comment