29 year old Erin Murphy Peters lives in Woodstock, Georgia with her parents, Tom and Stacy, her sister Kelly (27) and brother Benjamin (24).
Erin was diagnosed with MPS (https://mpssociety.org) in March of 1996. She was three months shy of finishing 1st grade, and her 7th birthday. Up until that point, Erin was a happy and healthy child. Erin’s first grade teacher, Mrs. Jane Hancock, informed us that she was beginning to notice some sign of fatigue and lack of concentration in Erin. She suggested we check with our pediatrician to make sure there were no medical causes for this. In a matter of weeks, with the help of our pediatrician, a gastroenterologist and a neurologist, the diagnoses was made. We were told that Erin’s blood tests showed a lack of the enzyme alpha-N-acetylglucosaminidase, which is associated with San Filippo Syndrome, Type B (https://teamsanfilippo.org). Unfortunately, we left with both heavy hearts and no treatment options. At this time, neither has changed.
Erin attended Cherokee County Schools (https://www.cherokeek12.net) from 1995 – 2011. CCSD provided excellent Special Education services at all levels of Erin’s education. When Erin graduated from Woodstock High School in 2011 at the age of 21, she transitioned to Next Step Ministries (https://www.nextstepministries.net), a program designed for adults with severe and profound disabilities. Erin also receives weekly music therapy at In Harmony (https://www.inharmonypediatrictherapy.com), and aquatic therapy from Unique Therapy Services (https://orthopedic.io/physio-clinic/unique-therapy-services-llc-roswell-ga/).
Due to the severe regression caused by MPS, Erin is currently functioning at less than that of a one year old. She has lost most of her cognitive abilities and is beginning to lose her balance more and more, a sign of impending loss of mobility. She continues to live at home with her parents and siblings and has a wonderful personal support staff as well.
Erin has always loved animals, both real and fictional. After receiving the tragic news of Erins diagnosis, we were told by our pediatrician that Erin qualified as a “wish kid” with the Make-A-Wish Foundation (https://georgia.wish.org). This remarkable organization sent “wish fairies” to our home to meet Erin and her family. Over a six month period they got to know us, and learn what Erin’s most favorite things were. Of all the things that Erin enjoyed, watching Scooby-Doo was her favorite. When she was asked if she could wish for anything, she quickly responded with “I want Scooby-Doo”. The wonderful volunteers at Make-A-Wish made that dream come true. Snickers, Erin’s chocolate lab, was three months old when she came to live with us.
The Make-A-Wish fairies also arranged for a life size Scooby Doo to surprise Erin and brought puppy gifts and even tucked her into bed. Snickers made Erin very happy, and loved her unconditionally for 13 years.
In the 22 years since Erin was diagnosed with MPS III, we have met many wonderful people who have joined our cause to find a cure for this rare disease. The “Run for Erin” is our way of contributing the the National MPS Society as they fund research efforts, clinical trials, and support families who have been stricken with MPS.