Michelle Mohan, 16, never knows what the next year, day or even hour has in store.
The Country Club resident frequently visits the hospital and has survived numerous near fatal spouts of illness since she was officially diagnosed with Mitochondrial Disease in 2007.
“We never, never heard this before from anyone,” Michelle’s mom Donna Mohan said. “We heard plenty of other things.”
Donna first knew something was wrong when Michelle complained of severe leg pain in January 2001. By March, she was confined to a wheelchair. Michelle hasn’t been on her feet since.
“She carried the wrong diagnosis for about a year and they just kept pumping her with medicine, Donna explained, still upset about the medical misread.
In 2002, Michelle began experiencing gastrointestinal deficiencies, and was subsequently hospitalized, forced to eat through a feeding tube.
As the first definitive sign that something was wrong with her daughter, it was, and still is a difficult memory for Donna. She said, “To date, my daughter hasn’t put anything in her mouth.”
While Donna said her son, Paul Michael, also suffered from a spout of Mitochondrial Disease when he was 11 years old, luckily his illness cleared up within a year.
Michelle wasn’t so lucky. “She just got worse and worse,” her mom explained.
Being a relatively new and therefore largely medically unexplored disease, doctors haven’t been able to provide Donna the answers she’s desperately searched for.
What she has learned is that Mitochondrial Disease results when the body’s mitochondria begins to malfunction, therefore causing an energy crisis and an inability for the body to burn food. The incompletely burned food could then act as a poison.
The disease has the potential to affect the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears or pancreas. Mild to fatal cases can include, but are not limited to, symptoms such as mental retardation, diabetes or thyroid dysfunction.
From 2004-2007, Donna said they traveled from specialist to specialist, before hearing about the disease or any hope for treatment.
Upon learning of a muscle biopsy, Donna said she was thrilled at the opportunity to potentially provide relief to her ailing daughter. Unfortunately, her insurance company didn’t approve the procedure for nearly two years.
There have been some good times. Michelle currently attends the Henry Viscardi School on Long Island. “It’s been the best thing that’s every happened to my daughter,” Donna said.
Though Michelle’s disease made her give up her passion for swimming, she currently enjoys arts and crafts projects, attending school and writing poetry.
While Donna receives much relief from seeing her daughter happy, her heart will continually ache for her little girl. “The reason it’s so hard,” she explained, “is because she’s in so much pain.”
Last year, Donna held a successful golf outing at the Pelham/Split Rock Golf Course, raising $10,000 for the United Mitochondrial Disease Foundation. Donna decided to host another fundraiser this year, and is getting the word out early in hopes of raising even more funds so that her daughter, and others like her, can get the help they so desperately need.
On Friday, August 29, from 7 p.m. to 12 a.m. Donna will celebrate her daughter’s 17th birthday at the Second Annual Michelle Mohan Fundraiser. Held at Maestros Caterers, the event will include entertainment, raffles and a buffet.
In the meantime, residents can still donate or find out more information by contacting Donna at (718) 828-3340.