Mike George has always had a big personality. For years, he was known for being charismatic, kind, and quick to make people laugh.
The 29-year-old from Fairport, NY invented his own words such as “slogo” (a blend of slogan and logo) and “conflummoxed” (a cross between confused and flummoxed). He loved watching sports, earned Life rank in Boy Scouts with 28 merit badges, and received a varsity letter as a student manager for Fairport’s state-caliber lacrosse team.
Mike’s father, Dave, recalls hearing people call out “MIKE!” whenever the family went around town. A George family saying is “E.L.M.”— “Everyone Loves Mike.”
Meghan, Mike’s sister, said the family has long thought of Mike as its “Sun,” recalling a line from the book Wonder: “Me and Mom and Dad are the planets orbiting the Sun.”
A Lifelong Struggle
Tragically, Mike has faced health struggles throughout his life. He began having seizures in 2009. By 2019, he was falling frequently due to fear and lack of confidence. By 2022, his body was rapidly declining. He is now reliant on a wheelchair and unable to speak.
“Mike had heart surgery on his second day of life,” said Dave George, Mike’s father. “His heart is now considered his healthiest part.”
Following years of medical uncertainty, support from Person Centered Services helped Mike George and his family find the answers they needed.
Care Coordination in Action
In August of 2022, Person Centered Services Care Coordinator Amanda Heberle started working with Mike. As she observed his health regression, Mike’s ability to walk steadily decreased until he could manage only short distances inside his home. Amanda witnessed his verbal communication deteriorate. Though Mike had once participated in a pre-vocational program, losing the ability to express himself affected his daily routines and independence.
Amanda partnered with Person Centered Services Clinical Team Manager Katie Reed to develop strategies that could help Mike and his family maintain as much independence as possible. They referred the family to Article 16 clinics for physical, occupational, and speech therapy. When the challenges continued, Katie proposed a case conference involving Mike’s healthcare providers.
Katie Reed brought nursing expertise and a willingness to understand medical issues that several doctors had described as “confusing” and “confounding.” She offered countless ideas for helping both Mike and his family. Most importantly, she encouraged a midday video conference with Mike’s specialists, even though organizing such a meeting seemed ambitious to Dave at first.
The virtual meeting brought together Mike’s primary care doctor, neurologist, and therapists. It made a comprehensive discussion possible, led to scheduling a much-needed MRI, and opened the door to genetic testing.
A Lightbulb Moment
Collaborative conversations resulted in “the lightbulb going on” for Mike’s neurologist, who referred him to a pediatric genetic doctor. That referral led to the testing that identified Cerebrotendinous Xanthomatosis (CTX), a rare genetic disorder affecting approximately one in 100,000 people. At age 28, Mike finally had an explanation for the condition that had been causing so many of his problems.
Even after Mike became nonspeaking, nurses, physician assistants, and doctors spent time reading and playing games with him during a long hospital stay. Amanda also visited Mike during his hospitalizations, providing company and support.
Through it all, Mike remains a local celebrity whose personality continues to shine through.
“Although we’re biased, I think anyone would agree that he’s one of the best people in the world,” said Emily George, another sister of Mike’s.
Katie George, Mike’s mother, describes Mike as “a funny, sweet, smart person who has never given up in his life. He just keeps going. He just does not give up.”
“People see Mike, they like him, and they want to help him,” said Dave George. “Everyone should be so lucky.”
Navigating the Future
For the entire George family, Person Centered Services removed the mystery and fear surrounding care for someone with complex needs.
“For many capable parents, navigating Medicaid can feel more daunting than helping a child reach the Ivy League, Division I sports, or a world-class symphony,” said Dave.
Amanda Heberle peeled away the layers surrounding state and agency requirements. When it became increasingly clear that Mike would be better supported in a group home, she guided the family through the process and wrote a cover letter that began opening doors.
According to the family, Amanda was a true friend and advocate for them. At first, they did not know which questions to ask or what the answers meant. Care Coordination through Person Centered Services was the key to providing them with understanding. What mattered just as much as practical guidance was that the team saw Mike first as a full human being, not solely as a person with disabilities.
Person Centered Services made difficult, complicated tasks and situations simpler. That support also helped the family continue working, having fun, and being themselves during a sustained, challenging situation. It reminded them that they were not alone.
“What I valued most is knowing that my parents and sister, specifically, have been able to have direction and guidance in the last several years as Mike’s health has begun to decline,” said Emily George. “There are many things that sound unnavigable that have been easier to manage with the assistance from Person Centered Services.”
Advocating for Others
The George family continues to advocate for stronger services for people with intellectual and disabilities.
“We’ve been lucky to have wonderful agencies also supporting Mike and our family,” said Meghan. “But those agencies could also use more support from the state, so anyone needing the support can get it.”
“Social programs go a long way,” said Emily. “Mike has so much personality, as do many others like him, but that’s easily dulled when people aren’t treated or cared for like humans.”
Seeing the individual humanity in all people is critical to connecting them to the resources they need. Person Centered Services is grateful to help families like Mike’s through challenging situations and to find solutions that can provide hope and a path forward.
