Local Musician’s Brother with Rare Medical Disorder Needs Help
Mike Howard’s brother Christopher was diagnosed with cerebral palsy at a young age. But something else was wrong, says Howard. “He had other things, such as his sugar, seizures, stomach issues…that hinted that it might be something more.” Then, two years ago, at the age of 10, Christopher was diagnosed with Kleefstra Syndrome, a rare disease which effects only about 50-100 people, worldwide. And now, with his brother’s health insurance waning, Mike has started an online fundraiser to raise much-needed cash for his brother’s medical costs.
Howard, a local Philadelphia musician and talent behind the band Home Covers, says at this point, finding money they don’t yet have is his family’s only option.
“Over the course of his life, it has always been a struggle with Christopher’s health insurance, to try and get him the proper care that he deserves,” he says. “It has been quite easy for them to drop nurses in the past, not cover equipment (feeding machine), and accessories, and even medication.”
According to Genetics Home Reference, features of Kleefstra Syndrome include “developmental delay and intellectual disability, severely limited or absent speech, and weak muscle tone.” Additionally, people with Kleefstra Syndrome have “structural brain abnormalities, congenital heart defects, genitourinary abnormalities, seizures, and a tendency to develop severe respiratory infections. During childhood they may exhibit features of autism or related developmental disorders affecting communication and social interaction. In adolescence, they may develop a general loss of interest and enthusiasm (apathy) or unresponsiveness (catatonia).” It’s only recently testing has been able to distinguish it from other disorders.
Howard says his brother cannot eat with his mouth and is forced to use a tube connected directly to his stomach—and it’s got to be there all the time. Christopher cannot walk and is currently receiving physical therapy at a special school.
In April, Howard began a fundraising page for his brother with the goal of obtaining $20,000 for treatment in time for his brother’s birthday. He says the money will go toward “medication costs, glucose strips, hospital bills, feeding equipment, Physical Therapy equipment, doctor visits, travel expenses, and if i am really lucky, possibly, a new bed for him.”
“My goal is to watch my brother grow up, learn to walk, and maybe speak his first words to my mother,” he writes on the Go Fund Me site. He’s raised just under $4,000 so far.
He also says it’s so far surpassed his expectations. And part of that, he says, comes with being a musician. Internationally recognized bands like Sigar Ros, Los Campesinos! and Grizzly Bears have shared Chris’ message to their Twitter followers. VH1 host Stevie Ryan posted about it on his Facebook page, too.
“Honestly, I have no idea how [the fundraiser] is coming together so well,” Howard says. “I guess a lot of people are resonating with the story and I didn’t expect such a huge response, but I am completely grateful and sometimes, even speechless.”
To learn more about Mike’s fundraiser and his brother’s condition, check out his Go Fund Me page.