One Tough Mother
In honor of my son's recent Duchenne muscular dystrophy (DMD) diagonsis, I have signed up to participate with the Race to End Duchenne team 1/2 marathon race at the 2020 Walt Disney World Marathon Weekend on January 11, 2020. I am joining the fight to end Duchenne and I hope you will support me. Please read our story below.
DMD is the most common fatal genetic disorder among children. Those with Duchenne are truly in a race against time as their muscles deteriorate further each day. To date, there is no cure. But there is hope. There is YOU. Please help us put an end to the devastating disorder by making a donation and supporting my race.
You can donate by clicking the button above, or if you prefer, you may also mail a check, made payable to Parent Project Muscular Dystrophy, to:
Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
(Please note that the check is in honor of Cheryl Prior/Disney World)
All funds raised will benefit Parent Project Muscular Dystrophy (parentprojectmd.org) and go directly toward researching a cure. Your contribution is 100% tax deductible.
Thank you for your support!
Please join Charlie's Muscle Facebook Group https://www.facebook.com/groups/792131514522032/?ref=share
Our youngest son, Charlie, was born a healthy boy in December 2015 after a normal pregnancy. Charlie is a happy child who is always smiling and ready to have fun! His blond curly locks, glacier blue eyes and dimples on both cheeks make him standout in a crowd; strangers often stop us to say he is the cutest child they have ever seen. Charlie enjoys puzzles, reading, swimming, being silly and snuggling, and he LOVES to play and be like his older brother, Noah.
After some signs of developmental delay, Charlie began receiving treatment with a Physical Therapist and Speech Therapist at age 3. After only a few sessions, Charlie’s PT noticed a substantial delay in body awareness, postural control and core muscle strength. Charlie could not jump or use stairs without assistance. She informed us that we might have missed something developmentally with Charlie. His delays were significant enough that she believed he needed further evaluations performed. We acted immediately, reaching out to our pediatrician. Soon after that, our pediatrician called for a blood test to check his CK (creatine kinase) enzyme level. We were made aware that Charlie showed the symptoms of a child with Duchenne Muscular Dystrophy (DMD), and because we had a family history of the disease two generations back on the maternal side, the odds were not in our favor. Within 48 hours, we had our diagnosis. On May 18, 2019, Charlie’s blood test result was a “panic” CK level of 17,000 (normal is 22-198), revealing he did indeed have Muscular Dystrophy. Two months later, his genetic test results confirmed his DMD diagnosis. Hearing those words turned our world upside down; nothing would ever be the same again. Our lives together divided into two pieces, before DMD and after DMD. Despite the terror that an incurable disease brings on a family, something else that happens that is more powerful and much easier to hold on tight to. That is Love. Through Charlie’s eyes, love stared back at us and reminded us to be thankful for all we have right now. Our hearts are full of love, hope, faith, positivity and our focus is on our life experiences together and getting the best possible care for our son. Life is an amazing wonderful crazy gift and we must be grateful and make the most of every day.
We have spent the first months after DMD, educating ourselves and meeting with experts on DMD. We have been to Boston, Rochester and connected with many other DMD families thru the Parent Project Muscular Dystrophy (https://www.parentprojectmd.org/), which is one of the best resources available for further information on the current state of care, advocacy, research and ways to get involved. On the medical front, Sarepta Therapeutics (https://www.sarepta.com/) is the leader in the development of groundbreaking treatments and therapies for DMD; their work has given so much to those affected with DMD.
We love to hear about your prayers for Charlie. Longtime close friends lit candles for Charlie at a local church in Castelo Rodrigo, Portugal and in the New Cathedral of Salamanca, Spain. Another dear friend and her family made an offering to a Monk at a temple and a wall of wishes in another temple while in Vietnam. Please keep Charlie in your thoughts and prayers.
Thank you so much for your support and joining the fight against Muscular Dystrophy.
Charles & Cheryl Prior
Warmly thanking to all those who are supporting Charlie around our community:
Fairgrounds Family Physicians, Children’s Therapy Network, University of Rochester Medical Center, Strong Memorial Hospital, Summerwood Pediatrics, SonShine Daycare, St. Ann’s Parish, GHD, LifePlan, Between Friends, Revercomb Dental, Baker Photograph, PPMD, MDA, Hal Welsh East Area Family YMCA, EDR, OPWDD