Graham
About me
Graham is a happy, kind, and energetic 2-year-old little boy from Georgia. He is always smiling, and everyone always tells his family that his smile can light up a room. He loves to make people laugh. He loves music and will dance anytime a song comes on. Despite his day-to-day challenges, he is still in constant motion, trying to keep up with his older brother and sister, and through it all, he has developed a close bond with his 5-year-old brother, Greighson. Greighson, who faces his own challenges with Autism and ADHD, has been a huge supporter of Graham. He doesn’t see him as any different and will be right there helping him and cheering him on any chance he gets. Graham doesn’t let anything slow him down. He may not always be able to do things like others his age, but with his determination and strong will, he will figure it out in his own unique way.
Diagnostic Journey
Graham’s diagnostic journey began when he was around 15 months old. He was very unstable when sitting up. He was not yet standing up on his own, and he showed no signs of walking. He was just beginning to crawl, but his family noticed that he was crawling with his left leg completely straight out. His mom initially thought it might be something wrong with his hip. She voiced her concerns with his pediatrician who believed he had hypertonia and global delays. Graham’s family had him start PT in October 2025 when he was 17 months old. At first, he made great strides with standing and even taking steps. In December 2025, his mom watched him take his very first steps down the hallway at therapy. That was an amazing milestone to see him accomplish despite all the hurdles they had been through Despite therapy, his balance and coordination continued to be unsteady, he fatigued easily and fell constantly. A neurologist then ordered an MRI which came back clear. Unsatisfied with so many unanswered questions, his family pushed for additional referrals and ultimately ended up visiting Children's Healthcare of Atlanta, Georgia. The doctor there took one look at him walking and said it was not cerebral palsy. He immediately suggested ataxia and ordered genetic testing. Graham was fitted for a protective helmet and AFOs and also received more extensive PT. Genetic results finally confirmed an ARSACS diagnosis in May 2026.
Message to the Community
When Graham was diagnosed with ARSACS, his family had little knowledge of what it truly was and how it was going to impact Graham's daily life and his future. They felt overwhelmed with the rarity of the condition and found that they constantly had to explain ARSACS to friends, practitioners, and care providers. Graham’s family expressed that hearing and reading about others who have been through the same situations has made them feel a little more hopeful. Their hope is for Graham's story to help others no matter what part of the journey they are on. They want others who may be in the same situation as Graham to remember to never give up hope. Always trust your instincts and do not give up fighting for answers. Celebrate every victory and each skill no matter how big or small. Live each day to the fullest.
Message to those unfamiliar with ARSACS
ARSACS is a very rare condition and does not affect everyone the same way. This can make it very challenging because what works for one person might not always work for another. Graham faces new challenges each day and his plan of care is constantly changing to help him in the best way possible. Sometimes his challenges are not always visible. Some days he needs more support, while other days he does not need any. For Graham and others facing similar challenges related to ARSACS, his family hopes for everyone to be truly kind and accepting. They want others to have patience and to be understanding. Finally, they pray that others see Graham for who he truly is and do not define him by his diagnoses.
Hopes for the Future of ARSACS
Graham’s family is hopeful for the future outlook of ARSACS. They are pushing for further awareness and further research. They don't want families to have to go through so many hurdles just for a diagnosis or for others to go misdiagnosed because other parents or caregivers might not always fight for answers. They want ARSACS to be known around the world and for everyone to understand all the challenges that it causes. Graham’s family want more inclusion and more resources to be available. Despite having ARSACS, they want Graham to grow up knowing that he is unique in his own special way, and they will do all we can to make sure he lives the best life possible.