Bangor-area executives and other business leaders are headed to jail next month.
It’s a good thing.
By tapping their friends and colleagues for “bail,” executive jailbirds in Maine last year raised more than $54,000 for individuals and families affected by muscular dystrophy and related genetic disorders, including Lou Gehrig’s disease, Friedreich’s ataxia and mitochondrial myopathy. The Maine Chapter of the Muscular Dystrophy Association, which organizes the annual Executive Lockup event, hopes to raise as much — or more — this year.
According to the association, hundreds of Mainers suffer from these progressive disorders, which are characterized by muscle weakness and wasting, loss of coordination, impaired functioning of internal organs and, typically, a shortened life span. Many conditions are diagnosed shortly after birth or in early childhood, while others may not strike until adulthood.
For 9-year-old Madyson Gray of Winterport, the coming fundraiser is mostly a distraction from the important daily business of her childhood.
The fourth-grader is in the midst of a busy summer — a morning special-needs program at Reeds Brook Elementary School in Hampden, a week with her family at camp, and playing with her younger sister Morgan and the family dogs Zeus and Buddy.
But for the third consecutive year, Madyson is serving as one of several “goodwill ambassadors” for the Maine chapter of the Muscular Dystrophy Association. That means likely appearances at various events, including the lockup fundraiser next month and the annual “Jerry’s Kids” telethon on Labor Day weekend.
“Maybe if I bring her, people will see her and say ‘Oh, yes — this is who I’m helping,’” said her mother, Tracy.
Madyson suffers from mitochondrial myopathy, a genetic condition that affects her central nervous system and causes eye problems, muscle weakness, spasms and other symptoms. She is unable to speak, walk or engage in many tasks and activities that are routine for children of her age. Her disabilities are likely to grow more pronounced as she gets older.
“Everything she does is a lot harder,” said Tracy Gray. “But she is still trying to do everything she can, and we are all trying to help her.”
Madyson has a 1,000-watt smile that she bestows on close family members, dogs and strangers alike. She reads and writes, slowly, at grade level. Her math skills are about on par, too. She can crack a sly joke, using her electronic “talk box,” a computer device loaded with hundreds of phrases and sentences prerecorded in Morgan’s voice. She uses the device at school and at home, navigating slowly through its many icons to arrive at the program she wants.
Each day after Madyson gets home from school, Tracy lifts her slender daughter out of her manual wheelchair and into a padded booster seat at the kitchen table for lunch. Madyson can eat a leisurely finger-food meal by herself and likes teasing Zeus and Buddy with table scraps. Later, she’ll settle into a secure play-table in the living room, made by her carpenter father Bob Gray, to play with dolls, toys and board games with Morgan.
The Grays’ two boisterous daughters keep them busy with their everyday needs, Tracy said. The many special accommodations made for Madyson just come with the territory.
But the financial strain is considerable.
The family travels in a specially equipped van, circa 2003, that cost $28,000. Equipment — wheelchairs, booster seats, shower seats — is pricey and often not covered by insurance.
The family has applied for financing to purchase a new double-wide home. Their current home is too cramped to allow Madyson’s wheelchair into the bathroom or into the cozy bedroom she shares with Morgan.
But Tracy said the toughest part of dealing with her daughter’s disability is the public response. She thinks it is a kind of reverse discrimination that prevents people from offering to hold doors or in other ways acknowledging the challenges of maneuvering with a disabled child.
“I don’t always need help,” she said. “But I always like to be asked.”
Making life easier
The annual executive lockup to benefit the Muscular Dystrophy Association is one of several fundraisers the organization puts on each year. Others include the annual telethon over Labor Day weekend and the Shamrocks Against Dystrophy campaign hosted by local businesses around Saint Patrick’s Day. The money raised at these events funds ongoing genetic research as well as clinical support and other assistance to individuals and families living with genetic disorders.
Each summer, the organization sends dozens of children and their families to summer camp at the Pine Tree Camp near Augusta. The lakeside facility is designed for children and adults with physical and mental disabilities. This summer, Madyson Gray and her family will enjoy a weeklong break from their daily routines there.
Executives who are nominated for and agree to participate in the MDA Executive Lockup this year will be escorted from their workplaces by volunteer police and fire “officers.” They will be whisked off to “jail” — this year it’s the Sea Dog Restaurant — in vehicles donated by local car dealerships. At the lockup, they will have their mug shots taken and be allowed to make phone calls to raise a pre-set bail of $1,600.
“That’s how much it costs to send two kids to camp for a week,” said Katie Kearns, a coordinator with the Westbrook-based Muscular Dystrophy Association.
While there is no cure for muscular dystrophy or other genetic disorders, Kearns said, much can be done to manage symptoms and complications and to make life a little easier for affected individuals and their families.
For more information about participating in the 2010 Executive Lockup on Aug. 18, call 854-3749.