Please join us in celebrating 25 years of Madison’s incredible courage, strength and love of life. Make a donation of $25 or more to honor Madison and to continue to help find a miracle for those like her with Spinal Muscular Atrophy or SMA.
Madison Rose Reed was born on February 4th,1997. She came into this world pink, rosy, kicking and screaming! Madison was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe & life threatening form of this genetic disease at 8 months old. Based on this diagnosis she was not expected to live past 2 years old. This year Madison turns a miraculous 25 years old!
SMA affects the motor neurons in the spine that control all voluntary movement like swallowing, breathing, head and neck control, sitting, standing and walking. Madison was never able to roll over or sit up and lost her swallow starting around 6 months old. She has gotten progressively weaker over the last 25 years but continues to wake up every day with a positive attitude and smile on her face.
There is no cure for SMA, but there is hope. There are currently 3 FDA approved drug treatments and if started early enough, before or shortly after diagnosis, the progression of SMA can be stopped. Miracles are happening every day for newly diagnosed infants. Many of these children treated early with these drugs show no signs of SMA and are reaching every physical milestone including walking. This was unheard of until a few years ago.
The Ohio State University SMA research lab headed by Dr. Arthur Burghes has lead the way in this groundbreaking research. The Miracle For Madison & Friends fund has helped with funding Zolgensma gene therapy which was researched & developed in The Ohio State University & Nationwide Children's Hospital SMA research labs. FDA has approved gene therapy only up to age 2, so Madison will never have the opportunity to receive this life saving treatment. She has been able to try the other 2 drug treatments but has not experienced any significant improvement or gains. This is where your gift today is needed the most to help find a treatment for the older children & adults.
The researchers in the Burghes lab are working continuously to help find a treatment/cure for Spinal Muscular Atrophy (SMA). Thank you for your support!