Patricia Weltin fought relentlessly to have doctors finally recognize the rare diseases that have ravaged her two daughters’ lives — hypermelanosis and Ehlers-Danlos syndrome.
Olivia, 19, has a deformed hand and foot, as well as scoliosis. She has undergone 21 surgeries, including one for a tethered spinal cord. Hana, 16, just had a hip dislocation.
“As a mom watching one child in pain is so very hard,” said Weltin, a single mom from Rumford, Rhode Island. “Watching both children in pain is unbearable.”
Some of Olivia’s teeth have fallen out and for a time, she has been in a wheelchair. Both girls have dark whorls on their torsos from hyper-pigmentation.
“One of the biggest issues of a rare disease is isolation and loneliness,” Weltin, 54, told NBC News. “Olivia has no friends. None. No one comes to visit and my heart breaks.”
So Weltin founded the Rare Disease United Foundation, which this year has created an art exhibit —portraits of real children suffering from 32 different conditions and designed to raise awareness among doctors for better diagnosis and research.
In the first month, the exhibit, “Beyond the Diagnosis,” was viewed by 100,000 people at medical schools around the country. It debuted at Brown University in February and is scheduled to go to Harvard Medical in November and then on to the National Institutes of Health in 2016.
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