Research Fund - Noah Shulman has raised $24,628 out of their goal of $30,000
About the Campaign
On December 29th, 2016, we welcomed our beautiful son, Noah Alan Shulman, into this world.
Like all new parents, we were ecstatic to take our baby boy home. On New Year’s Eve, Noah came home from the hospital and we took on a new level of happiness that no words can describe. Life was good. Little did we know, our world was about to come crashing down.
At just under two weeks of age, we knew something was wrong. Noah was not feeding well, not gaining weight and was overly sleepy. On January 12th, he was admitted to the hospital and an extensive workup began which went on for several weeks as doctors tried to piece the puzzle together.
After nearly a month in the NICU, Noah was diagnosed with a rare mitochondrial disease. This was something we had nearly no knowledge of, but came to learn he was 1 in 5,000 per year to be diagnosed with this awful disease. Mitochondrial diseases result from failures of the mitochondria, which is the part of the cell that’s responsible for creating more than 90% of the energy needed by the body to live and grow. When they fail, less and less energy is generated — cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.
Like a never-ending nightmare, Noah battled around the clock – each day came with highest of highs, and lowest of lows. Unable to breathe on his own, Noah required the support of a ventilator. He fed through a feeding tube and had blood drawn several times per day. Progression of the disease led to hypotonia (low muscle tone) and an inability to move his arms or legs.
But through it all, Noah never stopped smiling. His eyes would draw you in from across the room, spreading his love infectiously to all who saw him. Nurses, doctors, housekeepers, respiratory therapists all formed an eternal bond with our Noah — each of whom could always be found in Noah’s room “partying” the night away — reading him books, playing peekaboo, and dancing with him to his favorite songs. Despite his failing body, he maintained the playful mindset of a three month old baby – hopeful for a future outside of the NICU walls.
Sadly, on March 21st, 2017 and at just 11 weeks old, Noah peacefully passed on to become our angel. In his short time with us, Noah taught so much – the meanings of love, compassion, patience, strength and peace. He mastered the virtues of life before any of us. A wise friend told us, Noah graduated before he even went to school. This could not be more true.
How To Help
In our eyes, Noah didn’t “lose” his battle against mitochondrial disease — the disease won its battle against modern medicine. Despite all of the advances in technology, treatments for mitochondrial disease are mostly ineffective — there is no cure and the prognosis is poor. According to the United Mitochondrial Disease Foundation (UMDF), exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed. Others aren’t diagnosed until after death.
With your help, we can drive change. We’re asking you, our friends, family & Noah’s biggest supporters, to donate to Noah’s Fund. All donations will go directly towards supporting mitochondrial disease research.
Noah’s journey of spreading love, hope and compassion did not end after 11 weeks. His journey continues as we work together to spread his story far and wide, driving understanding and awareness of mitochondrial disease and hopefully, one day, a cure.
How You Can Help
Since 1996, the UMDF has funded nearly $15 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. Your donation moves us closer to treatments and, ultimately, a cure for others who face this devastating disease.
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www.umdf.org
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239
888-317-UMDF