One more week to Race Day! Thank you for your interest in the 4th Annual Flintstone Challenge 5K Run/Walk. Join us on race day or sponsor a local Flint student to run with their community through our website. Your contribution will go directly to the Flint Classroom Support Fund, a Great Idea Grant program that fosters interdisciplinary collaboration among teachers and impacts thousands of Flint Public School students!
In our final newsletter, we want to share with you the inspiration behind one of our registered runner’s commitment to race. Shortly after submitting her registration form, Bridget informed us that on May 1, she will be running for 4-year-old AJ, whose baby brother, Teddy, has a rare genetic disorder. As a member of an organization known as, I Run4 Siblings: The Unsung Heroes, Bridget dedicates every mile that she runs to AJ, who she explains, “bravely steps into the role of a caretaker, protector, helper, advocate, and so much more” for Teddy. Inspired by the uniquely intimate relationships that have been fostered by Irun4, we reached out to Teddy and AJ’s mother, Kerry.
Kindly sharing her family’s unique perspective, Kerry hopes, “by sharing [their] story, [they] will raise awareness and hopefully generate more interest from the medical and scientific field.” At the age of 28 months, Teddy became the 15th person in the entire world to be diagnosed with Multiple Congenital Anomalies Hypotonia Seizures Syndrome 1 (MCAHSS1), a type of Congenital Disorder of Glycosylation (CDG). Kerry went on to explain, “mutations of Teddy’s PIGN gene affect his body’s ability to send messages and connect information because the pathways and processes don’t function typically, explaining Teddy’s seizures, low muscle tone, and developmental delay.” Since this disorder was discovered a mere 5 years ago, the research is limited to a handful of case reports. Therefore, Teddy's family rightfully understands, “each child with MCAHSS1 will write his or her own story and has the potential to reach milestones not previously documented.”
Kerry credits 4-year-old AJ as good sport who, “comes along to nearly all of Teddy’s appointments, is a tremendous help in getting Teddy to work on his therapy goals, and accepts that this is just what we do and how life is.” She shares that AJ most enjoys his brother’s laughter, likes to teach him how to do thing, and enjoys playing together. However, being Teddy’s brother poses its challenges. Kerry explains, “it is hard to always have Teddy’s needs come first.” AJ has had to adapt in many ways that limit the freedom most other children his age enjoy. “He can’t play with small legos when Teddy is awake, for example, because Teddy will put them in his mouth.” The developmental delay caused by MCAHSS1 will force AJ to tolerate Teddy’s limitations for far longer than other siblings. Other challenges that he faces include Teddy’s occasional physically aggressive behavior, lack of time alone, and the arduous nature of medical appointments. In an attempt to navigate this experience for AJ, his family tries to balance the focus by doing AJ’s favorite activities with him while Teddy naps or have special dates with just AJ to provide undivided attention. The frequent messages and race memorabilia that Bridget shares with AJ is another source of tremendous support . As Kerry shares on her blog, which chronicles Teddy’s triumphs, “Bridget is someone who will be a fantastic role model for AJ as he grows older and learns about overcoming challenges and obstacles in his own life.”
Teddy’s family considers their I Run 4 running buddies as “two of the blessings [they’ve] received despite [a] slew of challenges and obstacles that comes with his diagnosis.” However, each and every one of us has the ability to impact the lives of other children like Teddy and AJ. In sharing the memory of a boy that patiently played a video game with AJ in the waiting room for one of Teddy’s appointments, Kerry shares her profound appreciation for the kindness of others who make their days brighter through a single interaction. “That young man in the waiting room was my hero that day.”
Find our complete correspondence with Kerry here!