Jack and Duchenne Muscular Dystrophy

Many parents do not recognize early signs of Duchenne muscular dystrophy (DMD) because their son’s movements only appear slower or a bit more labored than those of other children. Typically boys diagnosed with DMD lose their ability to walk between the ages of 10 and 14. These boys will lose most of their upper body strength, including the ability to move their arms, by their late teens. Also during their teenage years, young men with DMD will need respiratory support at night. Over time, their respiratory systems will weaken and they will require more constant support. Medical data suggest that young men with DMD survive only into their 20s.

Duchenne Muscular Dystrophy is not something you hear of everyday.

The first time I ever acknowledged this DMD was when I was sitting in a peadiatrician consult room. My beautiful, funny, polite, active, inquisitive little five year old boy who had barely had a sniffle or a scratch now has a diagnosis which has no cure.

My heart died right there and then.

Yet he still smiled and hugged me whenever he could.

Jack is now 13, we were admitted into Auckland StarShip Children’s Hospital for spinal fusion surgery on the 9th of April 2018. We have travelled from Nelson, South Island. Leaving our family and beloved animals behind.

Jack had a scoliosis curvature of 58 degrees. This needed to be corrected so it

would not effect his heart and lungs.

Unfortunately Jack fell into the 4% of infection risk. Since the initial surgery, jack has been into theatre five times for washing out of the infected area.

Jack has one more to go! This will be a plastic surgery procedure to cover up the damaged tissue on his lower back.

We are now here for a much longer stay and what has become obvious to me is how much better Jack's life will be back at home if we can give him a couple of very important items.

I am not one to ask for help...I am a solo parent and have managed alone for a long time. But I have listened to my friends and know that to get Jack these things I need your help.

I appreciate anything you can give or help with...Jack is the sweetest boy and deserves the best.