Hello, we’re Jen and Chris Shanley and we desperately need help saving our 20-year-old daughter Madeline. She is loving, intelligent, and caring. She was an honors student until the onset of brutal muscle spasms and pain put her entire life on hold. She had to drop out of college and move home as she couldn’t care for herself anymore. She is now unable to do things many of us take for granted such as walk, use the bathroom, eat solid food, and even just hold our hands.
8 months ago, a sudden and debilitating illness struck Madeline. For months we tried to get answers as our local medical community struggled to identify the illness that was plaguing her. Finally, after months of incorrect diagnosis, the local doctors suspected that it was a very rare disease. To get an accurate diagnosis, our family spent $4000 to rent a van that could effectively transport Madeline nearly 400 painful miles to see one of the few specialists in the country that could tell us what she has. Thanks to the amazing doctors at Johns Hopkins Hospital we found out what was truly wrong with her.
Madeline has a debilitating 1-in-a-million autoimmune neurological muscular disease called Stiff Person Syndrome. This horrible and debilitating disease causes all her muscles to fire at once causing excruciating pain. These full body muscle spasms occur repeatedly all day and night. They feel like extreme charley horses, and cause pain-filled paralysis that can last for months. We know that this disease very well may result in a life of chronic pain and paralysis for our daughter. She has been in the hospital for 47 days and currently only has the use of her mouth and one eye.
Despite all this adversity, Madeline is planning a future. She has told us she intends to help people with disabilities receive better care as she has experienced both the good and bad sides of our medical system. Her compassion has always inspired us. One example is that she has been telling the nurses currently caring for her that she is likely to scream in pain as they work with her and for them not to feel bad about it. It is this reason that we are reaching out for help to get her the support she needs. Chris, Madeline’s father, has been a teacher in Rochester City Schools for over 20 years. Jen, Madeline’s mother, works for a Rochester nonprofit serving the disabled. We’ve spent Madeline’s college savings and our retirement savings in our quest to find answers and save Madeline’s life.
Going forward, our family needs financial help with making accessibility renovations to her bathroom, purchase of a hospital bed, expensive medications, fees for on-going treatments, and co-pays. She will need an electric wheelchair, electric stair chair, and a modified van to transport her anywhere. Additionally, we need specialized medical transport home to Rochester from the hospital in Baltimore.
Madeline is a fighter - brave and inspiring - determined to have a meaningful, productive life. We’ll never stop fighting for her, but we’ve run out of financial resources. This disease, while depriving her of her physical abilities, has only strengthened her resolve to rise to the challenge. We cherish her resilience, brilliance, kindness, creativity, and passion for life.
SPS affects 1-in-a-million, but Madeline, too, is 1-in-a-million. We ask for your help and belief in her. She has the ability and the hope to impact the well-being of those afflicted with chronic illness and disabilities. If anyone can prevail, it’s this undaunted young woman. It is not normal for us to reach out for help like this, but we have reached a tipping point financially. It is out of sheer desire to care for our child that we ask for your help. Please consider donating and sharing this with your friends so our loving daughter, Madeline, can reclaim her future. No amount is too small and will go directly to assisting with her care and fighting this horrible disease.