I  had tried and failed to get Early Intervention for JB at 6 months old because I felt that he was not progressing the same way my daughter Caroline had.

I was suspect of all the excuses people gave me.  These included: he's a boy, he's the second, and he doesn’t spend enough time on the floor.

I was strangely happy that he was accepted into Early Intervention at a year because he was finally far enough behind.

In October I noticed JB was gagging on his drinks.  The gross motor delay and the aspiration led us to our pediatrician, a neurologist, and ultimately a diagnosis which consisted of the worst future we could have ever imagined for JB.  

When I met with the neurologist I was told JB looked great.  She did not believe his problems were neurological, but as a precaution she would schedule a MRI.  She also ordered blood tests to rule out any muscle diseases.

I received a call the next day saying that we needed to have further genetic testing because he had a high CK level. 

On January 9th I was told by the neurologist to come into the office the following day.  I was instructed it would be best if I did not come in alone.

My husband and I then badgered our pediatrician to tell us on the phone the diagnosis: Duchenne Muscular Dystrophy (DMD).  DMD is the leading genetic killer of children.

All we heard in the neurologist’s office the following day were the hard frightening facts. 

Thankfully, Jeff and our family rallied to find a wonderful place for JB's care at MassGeneral Hospital for Children Pediatric Neuromuscular Clinic.

The Pediatric Neuromuscular Clinic at MGHfC is a unique comprehensive care facility that provides superior care and support for patients and families.

Because of this clinic we have been shown a glimmer of hope and the inspiration to found JB’s Keys to DMD.

Although this will continue to be an extremely hard journey,

Jeff and I feel blessed.

We are blessed to have a wonderful supportive extended family.

We are blessed to have a forever smiling daughter.

We are blessed to have wonderful friends.

We are blessed we still laugh often.

We are blessed to have a fabulous pediatrician.

We are blessed to have found MassGeneral Hospital for Children Pediatric Neuromuscular Clinic led by Dr. Brian Tseng.

We are blessed that JB was diagnosed only after such a facility existed.

We are blessed that there are a group of scientists dedicated to DMD.

We are blessed to have had the strength to reach out to other educated families who have been affected by DMD.

We are blessed to have our wonderful son, JB.

With all our blessings we can make changes in the lives of boys with DMD and their families!