If you have been following our social media this holiday season you know that JB’s Keys to DMD has been fortunate enough to have spread magic to many, thanks to the generosity of the family and friends of the Barrick Family. This family, whose four-year-old son David was diagnosed with Duchenne just this summer, chose action instead of complacency. They chose action not just in finding care and treatments for their son David, but action that would and will continue to impact the whole Duchenne community.
The way that their choice of action came to fruition is the real magic from where I stand. I first spoke with Nicole Barrick on November 3rd. We were connected by a friend of a friend. We mostly spoke of what it is like to have a newly diagnosed son with Duchenne and all that entails. There is the sadness, the confusion, the urgency, the anxiety, and the depression but I also shared the good things that have come out of JB’s diagnosis. In the early days, and in many days after, it is sometimes impossible to see that there will be positives that come out of such a grim diagnosis, but there are. It is easy to dwell on only the challenges that your child with Duchenne will face, physically and emotionally.
I was able to pass on to Nicole JB’s experiences skiing, sailing, at camp, with friends, and extracurriculars at school. It can feel incredibly lonely as a parent of a child with Duchenne. I discussed with her the friends who are other mothers who have children with Duchenne. These women are often my lifeline and I can contact them day or night, good and bad. It is also difficult to consider the challenges that your other children will have dealing with a sibling with Duchenne. I talked about Caroline, and how her experiences have made her compassionate beyond her years. At the end of the call, I mentioned that I ran a nonprofit, and when she was ready maybe she would want to hear about some of the experiences we offered. I could tell Nicole was strong and would be a Duchenne parent to be reckoned with. I did not know how soon I would see that though.
Less than two weeks later, Nicole and her husband Tom had set up a call with me for what I assumed was them looking for further support. In reality, they came to me with an idea that would turn out to help over 100 families living with Duchenne by the end of this winter! The support system that the Barricks have in place from their family and friends like Janine and Laurie has already made an enormous impact. From my first call with Nicole to today, their brainchild Find Your David’s “All I Want For Christmas Is To End Duchenne", they have raised over $102,000 from over 480 individual donors. With the money they raised for JB’s Keys, we have given 82 $750 grants to individuals living with Duchenne in New England. The money raised will also help with programs like our adaptive ski program this winter, among other initiatives that they will direct.
How the connection was made between JB’s Keys and Find Your David was what has been magical, even miraculous for me. It has given me new vigor to continue to make a difference in the lives of young men and their families living with Duchenne. The past two months have been busy no doubt but also extraordinary. Seeing the dollars come in, and sending the money out directly to families has been so special.
It has led me to reflect on other magical and miraculous things that have happened in my life. There was the first Christmas after JB’s diagnosis, a couple of months after JB’s Keys to DMD was founded when a donation of $1,000 came in the mail from a total stranger. From the roof over our heads and unexpected support to moments when I see JB experience pure joy, I feel the magic.
As I look back on 2022 and the many trials there may have been, they are thankfully overshadowed by small and large special moments personally and for JB’s Keys to DMD. From new relationships and fostering the ones I have, to Caroline and JB’s accomplishments, there has been so much love and laughter. JB’s Keys has been privileged to be sought out by wonderful Duchenne families and friends like the Yuriks and Kim D’Amato who have allowed us to give the gift of Bruins tickets and trips to Sweden for Volt Hockey.
I am beyond grateful for the connections that allow JB’s Keys to spread happiness to people living with this disease and their families. I look forward to continuing the programs we have in place and seeing what magical new contacts bring our way as we grow.
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Beth Harvey, JB's mom and executive director of JB's Keys to DMD, lives in Dover, MA with her 2 children. In addition to JB, she has a daughter Caroline. I try to keep a sense of humor and have fun, as I attempt to keep my head above water.