Nemours/A.I. duPont Hospital for Children received a hefty $30,000 donation from a tiny donor.
Little Piper Lee of Garnet Valley, PA , and her family, presented the hospital with the money this week.
The 3-year-old was diagnosed with a rare form of kidney disease called Denys-Drash syndrome, two years ago.
Special genetic tests carried out in England showed that standard treatment of the disease, like heavy doses of steroids, would not help. Her kidneys would eventually develop malignant tumors. Knowing that, Piper’s kidneys were removed and she underwent a successful kidney transplant at A.I. in 2014. Her kidney donor was father Chris Lee; both are healthy and thriving.
Because genetic testing and DNA sequencing are still considered relatively new, tests for specific genetic mutations are not carried out in very many labs.
“I truly believe that genetic testing saved Piper’s life,” said dad Chris Lee, during an interview with WHYY in the spring. “One of the things that always bothered us through this process was the fact that it was so difficult for us to get the genetic testing done, that we had to send her blood to England.”
As a result, the family started Piper’s Kidney Beans Foundation to help bring the testing that was done overseas to Nemours and to offset costs of the tests for families who can’t afford it. The foundation’s first donation of $30,000 allowed the hospital to buy equipment that will enable next generation testing for kidney disorders in the labs right here in Wilmington.
Nemours spokeswoman Karen Bengston said researchers are busy creating a genetic testing panel of potential gene mutations found in children that may or may not be disease-causing. Bengston said she’s hopeful patient testing will be ready to go in the first few months of 2017.
The foundation held its inaugural “Beanefit,” in May, to raise money towards this week’s donation. Chris Lee said he and wife Erin are already planning the second annual fundraiser in March.