My son Philip, who will be 39 in 3 months, is in many ways one of the luckier men with a slow-moving but very incapacitating form of Becker MD. Phil has accepted the fact that he is almost totally dependent on his Home Care Aides. Phil has chosen to lived in Nebraska on his own since going to the Univesity of Nebraska in 1994. Phil was the impetus for my Doctoral Dissertation at Ohio University in 2002. I interviewed families throughout the US to compare the incidence of DMD/BMD concomitant with Learning Disabilities. Surprisingly, boys (and rarely girls) othen have both disabilities. This provided me the opportunity to bond with families and share the latest news about our children.
Phil went on to get a Master's in Geographic Information systems. He has worked on data entry for the Department of Roads in Nebraska since 2003. He has been an inspiration to many people and although we do not see him on a regular basis, we feel blessed that he is managing to hold his own. We applaud the go forward approach that PPMD has fostered. Phil's deletion is quite large-- exxons 3-48 so we do not hold out much hope for a cure for him but we also count ourselves very fortunate that he is able to maintain a high quality of life.
Like all parents, we long for the day that DMD/BMD is finally eradicated.