Guest blogger, Jenn McNary, shares her story of hope, caregiving for her two boys with Duchenne Muscular Dystrophy.
If you are just joining us, please read part 1 of her touching story here:
Jenn’s Story: Facing Duchenne’s Muscular Dystrophy Head On
Jenn McNary is a single mom of 4 children living in Pembroke, Mass. She currently works as the Director of Outreach and Advocacy at the Duchenne focused Jett Foundation located in Kingston, Mass.
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Jenn’s Story: Part 2
It is an exciting time in Duchenne history right now. We are a “lucky” community with several very promising drugs in the pipeline, and a lucky family who seems to have won the mutation lottery and have the first mutation to be targeted by a safe and effective new treatment.
Both boys are in a clinical trial (finally), Austin has only been on drug for two weeks but Max has been on for over 3 years and his disease progression is defying natural history. He is still walking at almost 13 years old!
The boys have Duchenne, but Duchenne doesn’t define them. Austin is a dynamic teenager- He has a passion for animals, is a loyal friend with an infectious laugh. Nobody who meets this boy walks away unmoved or unaffected by his spirit.
Max is a shy boy but the bravest 12 year old I’ve ever met. He has spent the past 3 years in a clinical trial for a new drug aimed at treating the cause of Duchenne, he happily signs consent forms for multiple, sometimes invasive and painful medical procedures, and returns enthusiastically for his weekly treatments knowing he is one of the fortunate few receiving the drug.
This deadly disease affects every aspect of life in our family. Living with Duchenne almost certainly tests even the strongest relationships. It leaves no family member untouched. Austin and Max have two siblings, James and Norah (seven and three) who have grown up with an understanding of the disease and medical care. They have the forced flexibility and patience that comes with hours traveling to medical facilities and waiting in waiting rooms.
I try not to think of this as wholly negative, I believe that this exposure to children with disabilities has created a caring and accepting side to James and Norah that they may not have had without their older brothers. I hope I am teaching them to value their time with Austin and Max, because time is certainly not on our side.
Time is an interesting concept for us. It moves differently for a family affected by a terminal illness. It seems to move at a crawl as we wait for drugs to be developed, for trials to enroll for new therapies to be approved. It stops as we watch our sons struggle to breathe during a respiratory illness, wondering if this will be the one that ultimately takes their life.
Unfortunately time also flies by at an alarming rate as we helplessly stand by watching our child grow older and decline year after year– we wish for time to stand still, for the boys to stay healthy and young for just a little longer while science and regulators’ decisions catch up to their diseases progress.
I can only hope that in this case, time will be on our side, and this generation of people affected by Duchenne will have a fighting chance to beat the disease.
I certainly have dedicated my life to seeing that wish come true.
Photo credit: Reid Photography
Thank you, Jenn, for sharing your caregiver story! Be sure to read part 1 of Jenn’s guest blog post here.
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