Andrew's Story

Andrew was born full-term at 38 weeks via emergency c-section because we found out during labor that he was breech.  Andrew was sent home with a clean bill of health and we were ecstatic with our new baby boy. 

Andrew was just 14 ½ months old when Nathan was born.  Not yet walking, we began to keep a close eye on Andrew’s development with everything we were learning about Nathan’s prematurity.  Andrew walked independently at about 17 months. 

Right before Andrew’s third birthday, we had him evaluated by an orthopedic surgeon and started PT as a result.  Andrew’s gait was a bit young for his age and he also showed low-tone in his trunk and tight heel cords.  At Andrew’s third birthday, we had him evaluated at Parkway Early Childhood Center in their play-based screening.  We were then sent for another evaluation from Special School District and learned that Andrew qualified for services.  Andrew began getting Speech, OT and PT through SSD.  After a year of therapies through SSD and private weekly PT, we still wondered if there was something else going on that we had overlooked.  Andrew was doing well with all of his therapies and making progress, but not yet catching up to his peers. 

At his four-year check-up with the Pediatrician, I voiced these concerns and was advised to get Andrew evaluated by a Neurologist.  At that evaluation, Andrew cognitively was just fine, but the neurologist shared our concerns for Andrew’s gross motor delays.  We were then sent for blood work to see if he could possibly have some sort of muscle disease.  To our horror, we found out in early February 2012 that Andrew has Duchenne Muscular Dystrophy - DMD.

DMD is one of 9 different types of MD, but probably the most aggressive as far as the damage it causes (and quickness). It occurs mostly in boys, with 1 in every 3,500 male births worldwide being diagnosed with this. What we are most distraught about is that stats tell us that almost all boys will be using a wheelchair by age 10-12. Even more is that life expectancy is somewhere between 20-30 yrs old.

Right now, Andrew is taking steroids and heart medication.  This is the first course of action to help maintain his muscles and keep him as physically active as possible.  We have no idea how long these drugs will help before Andrew's muscles start to deteriorate and make him less and less active and mobile.  Andrew is behind his peers and has a hard time keeping up with them.  Stairs, getting up from the ground and most physical activities are a challenge for Andrew.  It is only going to continue to get harder and harder for our sweet little boy.

There is no known cure for Duchenne Muscular Dystrophy.  A miracle is what we need - that is our only hope and we constantly pray that something will break free in Andrew's lifetime - however shortened that might be now.  Unfortunately, it is only a matter of time before time runs out.

 

Cherish Yesterday - Dream Tomorrow - Live Today