Mikelle Naftali

My daughter Mikelle Naftali was diagnosed with Spinal Muscular Atrpohy Type I. This disease is also known as Werdnig-Hoffmans disease. She will be one year old on September 11 2005. She received a trach and g-tube in April of 2005. This disease is genetic and terminal with most children not surviving past the age of 2. She has been lucky since her surgery. She has not been hospitalized nor been ill. The biggest threat to her is respitory infections and colds. With this disease she has no muscles. What little muscle she has will deteriorate over time. She is on a vent 22 hours a day. Mikelle is our angel. She is happy most of the time and very intellegent. That is one of the hardest things in dealing with this disease. She understands everything. I am interested in hearing from other parents who deal with this disease.

Please email me at pnaftali@bellsouth.net

Or you can see her website at www.help-mikki.com and please sign her guestbook.