I first met Megan Miceli when she was 6 months old. She was a beautiful little girl with blond hair and blue eyes and an infectious smile that reached from ear to ear. But when her parents noticed that Megan wasn’t hitting milestones at the rate her siblings had, they grew concerned and brought her to Kennedy Krieger.
With weekly physical therapy sessions and her mother diligently working with Megan at home, she slowly began making strides in her motor skills. In the meantime, an extensive medical workup revealed she had hypotonia and a gene microdeletion, which was the root of her medical problems. The gene deletion is so rare that there have only been six reported cases since 2009. In addition she was also recently diagnosed with episodic hemiplegia, another disorder that affects 1 in 1 million people. Without warning, Megan can experience an attack of paralysis on the left side of her body multiple times per week, each lasting between 5 and 20 minutes.
After spending some time processing her diagnosis, Megan’s parents decided they would use her story to help other children diagnosed with genetic disorders. They started a call to action and created the Miracle for Megan Foundation, with a goal of raising awareness, increasing research, and developing optimal treatments for people with genetic disorders.
Their hard work and dedication is making a difference. To date, a $5,000 donation has enabled the physical therapy center at Kennedy Krieger Institute to purchase new equipment, and an additional $5000 donation was given to Dr. Ali Fatemi, a pediatric neurologist with a primary interest in children with genetic conditions. Another $10,000 allowed for the creation of a scholarship program to help families of children with genetic disorders to cover the costs of medical care, equipment, or education. The Micelis are in the process of helping a family in their network to come to Baltimore and see one of Megan’s specialists. It’s a wonderful gift to help another family in a similar situation.
To better serve their daughter—and patients like her—Megan’s parents have reached out to everyone who’ll listen. Megan’s story has been featured on Baltimore’s local FOX news channel and in the local newspaper. Amie Miceli created “The Miracle for Megan” Facebook page for friends, supporters, and other families to follow Megan’s story. Just last week Amie was on Facebook asking her followers to “like” a page so that Megan could win a cooling mat to help her sleep. Her followers sprang into action and Megan won! She updates Megan’s status, shares pictures, and posts inspirational notes. My favorite so far is this one: “Every child is gifted. They just unwrap their packages at different times!”
Megan continues to receive weekly physical therapy at Kennedy Krieger. She uses a walker, cruises along the couch, and she’s taking her first steps without support! She’s come so far since first starting physical therapy, all through her own hard work and the determination of her parents. The first annual Miles for Megan 5K was held in October 2010 with more than 400 registered participants, and they’re in the process of registering participants for the 2011 race. At last year’s event, Megan was on the sidelines in her pink bunny costume cheering on everyone and flashing her beautiful smile. The second annual Miles for Megan will be held Oct. 29, 2011, at the Padonia Park Club in Cockeysville, Md. I’m sure with the determination of her parents, Megan will one day be in the race herself!
To learn more about “Miracle for Megan,” visit www.facebook.com/miracleformegan.
Tarra Dendinger is a physical therapist at Kennedy Krieger Institute.