Updated: Dec 29, 2020
Imagine someone telling you: your child has months, if not weeks to live. A leading Geneticist telling you that he has never seen ANYONE with this disease before; in fact, there are only 50 children living with this disease in the world!
NO TREATMENTS. NO CURES. NOTHING IN THE WORKS.
While I have so much respect for the medical community, it was in this moment that I realized that I had even more respect for my maternal instinct. I didn't know ANYTHING about this devastating news, but there was one thing I did know- NASH WASN'T GOING DOWN WITHOUT A FIGHT. I certainly wasn't going to let someone who has seen this the same amount of times as me determine my child's fate, future or outcome. As a mother, I have never been so sure of my maternal instinct.
The Comeback is Always Stronger Than the Setback
Nash was diagnosed at 11 months old with SMARD (Spinal Muscular Atrophy with Respiratory Distress- an entirely different disease than the commonly known SMA). Immediately, I began doing research and trying to understand what this meant. "Life expectancy of 13 months." 2 months to live simply was not enough, but what really were my options? This picture above was taken on his diagnosis day and I remember thinking:
"WE ARE GOING TO FIGURE THIS OUT LITTLE LOVE BUG. YOU HANG ON, AND
I WILL HANG ON TIGHTER."
"I don't think you can really understand relentlessness until you've faced your worst fears..." - Tim Grover, Relentless
I don't think there is a fear more unrelenting than losing your child, besides actually losing your child. In this moment, I decided that I don't have a right to the cards I felt I should have been dealt, but had an obligation to play the hell out of the ones that I am holding. NO ONE was going to put an expiration date on my child, and that it was UP TO ME TO FIGURE IT OUT. I wasn't sure how, but I knew I had to. I have always had a strong personality, which has come in handy (but has also ruffled some feathers along the way).
We were given this mountain to show it can be moved...
Nash was on borrowed time at this point. After months and months of research, connecting with other families, we had one goal: #smashSMARD. At the time, no one was actively researching disease mechanisms or treatments for SMARD. Promising research was happening in similar diseases and my husband, Bobby and I made it our mission to connect with anyone who had any understanding of Gene Therapy in Pediatrics. We spent the months following Nash's diagnosis connecting, interviewing and pounding on doors of MANY researchers. Finally, in November of 2018 (a full year after Nash's diagnosis) we "met our match." Dr. Kathrin Meyer's Lab at Nationwide Children's Hospital had the experience of bringing such therapies to children with different (but similar) diseases. We sat in the room with what we like to refer to as our "angels" and all of the stars felt aligned.
Never let fear decide your fate...
In December of 2018, our Non-Profit, smashSMARD was approved. We had a monumental task to raise more than $2 million, and quick. This money would be used to fund the pre-clinical research that would be necessary to develop a treatment. After finally solidifying the research team, we were now pursuing Pharma companies. We were told that with a disease so rare, that we can expect to MAYBE raise $100,000 our first year. I remember one of these meetings so well... I looked the CEO dead in the eyes, and said "You don't know my friends."
We started fundraising in February of 2019. In 2020, we have been able to transfer more than $2 million to advance gene therapy research in SMARD. Yes, we were able to raise more than $2 million our first year through relentless fundraising campaigns, an amazing community of friends and tens of thousands of donors. On Facebook alone, we raised $500,000 in 10 months! There was so much fear in putting our story out there, but the goal to keep Nash alive created so much vulnerability.
A person can do incredible things if they have HOPE...
Nash has outlived his prognosis by 2 years, and just turned 4 on November 18, 2020. Each and every day, he reminds us that life is a gift. We choose to focus on what he CAN do, versus what he can't, and empower him to keep pushing his limits. We have so much exciting news to share in the coming months, but our hard work continues to leave us with so much HOPE for the future... and HOPE IS ALL WE HAVE.
smashSMARD is proud to announce its support of a promising research program to be conducted by Dr. Kathrin Meyer at the Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, Ohio USA. Dr. Meyer's laboratory at AWRI has a longstanding translational focus on neurodegenerative diseases and an encouraging track record of moving therapeutic programs towards clinical trial.
With SmashSMARD’s funding support, Dr. Meyer is now bringing that focus to SMARD. Dr. Meyer’s lab develops Gene Therapies for neurological and neuromuscular disorders by using an approach that increases full length protein expression. Spinal Muscular Atrophy with Respiratory Distress (SMARD) is an ultra-rare neuromuscular disease that affects the IGHMBP2 gene. SMARD is an inherited condition that causes muscle weakness, respiratory failure and ultimately death in infancy.
SmashSMARD looks forward to Dr. Meyer’s work in supporting
the translation of SMARD research to a clinical trial in the coming months.
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