3 Cheers: Families Of Girls With Ultra-Rare Disease Join Forces
NEW JERSEY (CBS) - Two families, one from Jersey, one from Boston, joined forces to find a cure for the rare disease their daughters have, and the families met by chance. Six-year-old Molly Duffy and 5-year-old Robbie Edwards love their adventures together.
"They like to play in their own way," said Angela Duffy, Molly's mother.
But the girls share more than that. Both have an ultra-rare genetic disorder called Hereditary Spastic Paraplegia Type 47, or SPG 47.
"For them to be able to come together and see a friend that has a walker just like them and to, I'm gonna start tearing up... it's huge," Kasey Edwards, Robbie's Mom, said.
SPG 47 is similar to cerebral palsy. It restricts the girls' ability to walk, talk, and it's degenerative.
"Molly struggles on a daily basis with doing the things that we take for granted, but she never lets it slow her down," Angela said.
Both Molly and Robbie were diagnosed as toddlers, and both families were told their child was the only one in the country with this disease.
"What was going through your heads when you found out your daughter had this very rare disease?" CBS3's Chandler Lutz asked.
Chris Edwards, Robbie's dad, paused. "Shock," he said.
Then Robbie's mom Kasey, who lives in Boston, saw a post on Facebook from the Duffys about their daughter in New Jersey with the same disease.
"My heart stopped, it literally stopped," Kasey said, "and I messaged him right away."
"It just was instant connection, because someone knew and someone knew exactly what you were going through," Angela said.
The families started the nonprofit CURE SPG47, and they've hosted three annual Golf For A Cure tournaments at the Riverton Country Club, where Molly's dad Kevin is the golf pro. In the past three years, they have been able to raise more than $640,000 to fund gene therapy research.
"So for us it's amazing," Kevin said.
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