
"Hope for Noah: DMD Gene Therapy - ELEVIDYS Fundraising
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Meet Noah Quintana, our 29-month-old son, who was diagnosed with Duchenne Muscular Dystrophy (DMD) at just 8 months old. Our journey with Noah began with a terrifying twist of fate – during a routine OBGYN visit, a sonogram revealed irregularities in his heart rhythm. Without hesitation, doctors rushed to perform an emergency cesarean surgery, and Noah entered the world on November 8, 2021, at 3:10 PM, fighting with all his might.
Despite his rocky start, Noah's early months seemed ordinary until his mother noticed frequent trembling while breastfeeding. Concerned, we sought answers from our pediatrician, only to be reassured that it was nothing to worry about. However, our parental instincts urged us to dig deeper, leading us to a neurologist nearly 7 months later. Tests revealed unsettling results – abnormal reflexes, sky-high CPK levels, and liver enzymes off the charts.
The devastating blow came with the genetics test results received on August 31, 2021. I, silently grappling with the weight of the diagnosis, withheld the truth from my wife that fateful evening. Duchenne Muscular Dystrophy – a reality I couldn't bear to utter aloud until I had gathered enough strength to face it together the next morning. Sleep evaded me as I researched tirelessly, desperate for any glimmer of hope amidst the darkness.
Now, 21 months later, Noah fills our lives with boundless joy – his laughter echoing through our home, his energy infectious, his spirit indomitable. But time is not on our side. Noah relies on steroids to alleviate his muscle pain and inflammation, but what he truly needs is access to the latest breakthrough in gene therapy – ELEVIDYS. With a staggering price tag of 3.2 million, this medication holds the promise of a brighter future for our son, but it remains painfully out of reach.
As we navigate this heartbreaking journey, we cling to the hope that humanity's compassion will shine through. Together, we can rewrite Noah's story, turning despair into determination, and fear into resilience. Every donation, no matter how small, brings us one step closer to the miracle our son so desperately deserves. Join us in the fight for Noah – because every moment counts, and he deserves a lifetime of love, laughter, and limitless possibilities.
Organizer

Edgardo Quintana -Father
Organizer
Brentwood, NY