Magazine article The Exceptional Parent

Molly Bear Foundation

Magazine article The Exceptional Parent

Molly Bear Foundation

Article excerpt

Not long after Sean Brown and his wife Erin chose a name for their unborn daughter, a friend gave them a stuffed animal, which they fondly called "Molly Bear's Molly bear." The nickname stuck.

"We didn't have any idea about the 'unsinkable Molly Brown' until after she was born and people kept saying 'Molly Brown? Like the unsinkable Molly Brown?'" Brown recalls. "Molly Bear just seemed fitting because she was such a tough kid."

Molly was born with Trisomy 18, sometimes called Edwards Syndrome. It is the second most common chromosomal disorder next to Down syndrome; three appearances of the 18th chromosome, rather than the usual two, cause varying degrees of physical, mental and developmental disabilities. Many children with T18 don't live to see their first birthday. Molly Bear did.

Unlike some families, the Browns, who lived in Highstown, N.J., were relatively financially secure, and their friends and family members were extremely supportive. Molly, who ate her meals through a feeding tube surgically attached to her stomach, required a special type of formula that could only be purchased from a medical supply company. "When I switched jobs and my insurance was changed, it stopped covering this formula as well as the supplemental oxygen we had in the house, and the pulse oximeter," says Brown. "We didn't get a bill for several months and when we did, it was over $5,000. But she had to have the formula, so we had to figure out a way to pay for it monthly."

After Molly passed away in 2008, at the age of 19 months, the Browns vowed to help other families raising children with T18. The Trisomy 18 Foundation and other support groups had been helpful, says Brown, "But we were not aware of any organizations focused only on directly assisting families financially."

Launched in early 2009, the Molly Bear Foundation aims to provide a better quality of life for families living with Trisomy 18 while helping with uncovered medical expenses, in-home care and therapy, physician-prescribed formula not covered by insurance, and supplemental oxygen for home use. (Parents submit invoices and the Foundation pays the vendors on their behalf.) In addition, in January the board of directors voted to award the first Molly Bear Foundation grant to a family in Waterbury, Conn.

Much of the funding is raised by Team Molly Bear, a group of more than 30 local athletes who run, bike, swim, walk and participate in other high-energy, publicized events. …

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