2 toddlers with rare disease form friendship in their fight for cure

ByJeff Chirco via WPVI logo
Saturday, December 17, 2016
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A couple from Hatboro, Montgomery County, are going into the new year with renewed hope, despite a desperate medical situation confronting their daughter.

HATBORO, Pa. -- Like most 3 year olds, Hatboro, Pennsylvannia native Molly Duffy is active and adorable.

But the toddler also lives with an extremely rare disease called hereditary spastic paraplegia, or SPG47, which causes delays in cognitive and physical functions such as talking and walking. The diagnosis came last year.

"Initially we were devastated. And not having information, we didn't really know where to turn. We didn't have anyone to talk to," said Angela Duffy, Molly's mother.

"We were originally told there's seven medically-documented cases, and none were in the United States. We were on an island. Were were the only ones," said Kevin Duffy, Molly's father.

With no cure and no active research, Kevin and Angela Duffy tried to remain hopeful.

But it became a bit easier when they learned about Robbie Edwards, of Massachusetts, a 3-year-old with the same condition.

Their parents connected on a Facebook support group in September, and the families met face-to-face last month in Boston.

"Our hearts started racing. There's someone else and they're in Boston. For us, it really changed our outlook," Kevin Duffy said.

The two toddlers played together, united by their common conditions and parents desire to save their lives.

Even though caring for Molly is a full-time job, the Duffys are taking on a new challenge. They've started a nonprofit to raise awareness and hopefully find a cure for SPG47.

"There's gene therapies that are on the horizon that show promise. They'll be able to, I think, stop the progression," Kevin Duffy said.

Until then, The Duffys and Edwards hope that spreading the word about SPG47 will also help diagnose others like Molly and Robbie, who they believe aren't alone.

To learn more about SPG47 CLICK HERE.