Yesterday I had the pleasure of meeting the Crow family of Madison. Their daughter, Emily (11), has a rare genetic condition called chromosome deletion. This condition can cause mental retardation as well as low muscle tone, which can make it difficult for those affected to get around. For the past year and a half, Emily's parents, Bill and Mary, have been taking her to United Cerebral Palsy of Greater Cleveland for physical therapy so she can gain strength and mobility. Though the organization is titled United Cerebral Palsy, UCP also treats patients with "a variety of disabilities, including cerebral palsy, developmental disabilities, acquired brain injury, spinal cord injury, spina bifida, multiple sclerosis (MS), muscular dystrophy (MD) and learning disabilities," according to their website. Last year Bill, Mary, and their oldest son, Adam, participated in a relay team in the Cleveland Triathlon to fundraise UCP, which is the official charity of the triathlon. This year, the family will be part of 3 different events at the Triathlon. On Sunday, August 8th, Mary, Bill, and their son Aaron's friend will be on a relay team, Adam (19) and his girlfriend will be participating in the sprint, and Aaron (16) will be participating in the super-sprint. So far, Team Emily, as they call themselves, have raised $3,000 for UCP.
"We really want to get the word out about UCP; this is really important to us," said Mary. She and Bill are beyond pleased with the care Emily has received at UCP.
“It’s a neat atmosphere, it’s just like a family...babies are crawling around and everybody’s kind of taking care of everybody," says Bill. Mary shared a success story she witnessed at UCP recently.
"There’s a little guy who can’t even sit up, and I walked around the corner, and there were therapists lined up ... they had Kleenexes out, they’re crying. The mom’s taking pictures and another person is holding her baby so she can take pictures...he (her other child) was taking his first steps with this special walker...it was like this party in the waiting room because he was doing that. That’s why we like it there," explained Mary.
The Crows will be participating along with other families competing for Team UCP, the large team composed of all those participating on behalf of UCP. But there will also be many Olympic-class and professional athletes participating alongside them.
"When you cross the finish line it’s not (just) people there cheering for Olympic athletes...it’s a lot of therapist and parents that are there, excited for the kids with disabilities who are crossing the finish line. The training that kids like Emily are going through on a regular basis at UCP, I think is a lot of times comparable to what these Olympic athletes are doing in preparation for this triathlon, so to have them running the same race togheter...I think the effort is pretty much equal," said Adam.
He will be pushing Emily in a jogger-stroller during the running portion of his event so that they can cross the finish line together. Mary recalled this as a particularly wonderful part of last year's triathlon.
"I think the best part for us was the finish line, and some parents got their kids out of strollers and helped them walk across so they could finish...it’s really an emotional day," she said.
To donate to Team Emily online, please go to www.active.com/donate/teamucp2010/teamemily
--Shannon Bowens, Intern