Canton High School Math Teacher's Son Needs Bone Marrow Transplant
Seven-month-old Ryan Cuffe, son of CHS math teacher Stephanie Cuffe, has been diagnosed with IPEX, a rare genetic autoimmune disease.
Canton High School math teacher Stephanie Cuffe started teaching math in the district last year but, since her son was born seven months ago, has been on a leave of absence spending her days at Children's Hospital hoping to help her first-born-child beat the odds against a rare genetic disease.
Two weeks ago (after months of being in and out of Children's Hospital), seven-month-old Ryan Cuffe was diagnosed with IPEX (Immune Dysregulation Polyendocrinopathy Enteropathy X-linked) which, according to www.ipexconsortium.org, is a rare genetic autoimmune disease that is caused by gene mutations, is often founds in boys, and is usually accompanied by insulin-dependent diabetes.
"I leave the house at 6:45 a.m. and get [to Children's Hospital] about 8 a.m. and I'm here all day," said Cuffe, who helps administer Ryan's medicine through an infant insulin pump. "My husband [Chris] joins me after work and we leave around 6:30 p.m. or 7 p.m. once Ryan's asleep…It's a long day."
The Cuffe family lives in North Easton.
"She's basically raising him in the hospital," Pat Falcione, Ryan's maternal grandmother and Canton resident, said.
"That's their whole life and focus right now," said Ed Falcione, Ryan's maternal grandfather.
Pat Falcione said the severity of the baby's symptoms was discovered when his mother transitioned him from breast milk to formula.
"He was undiagnosed for six months but as soon as his own immune system had to kick in, it started fighting itself," Pat Falcione said. "We have a diagnosis and we have a little bit of hope to hold onto."
The Dana-Farber Cancer Institute held a bone marrow drive at the Natick Fire Station (where Ryan's uncle is a firefighter) last week to increase the chances of finding a match for Ryan.
Cuffe says there are only 200 known cases of IPEX, and she asked that people consider becoming a bone marrow donor.
"Kids with IPEX, their body ends up attacking all different organs. Unless you try to stop, the outlook is grim," Cuffe said. "It's good we caught it early, we just have to do the transplant because it's our only hope."
"The best way for people to help is to become part of the national register," she said. "There's not much else to do except to get more people on the donor list and increase the odds of finding a match."
The process is simple and involves 10 minutes of paperwork and a simple cheek swab that is sent to the national register for analysis. If you are a match for anyone looking for a donor, you will be contacted.
For more information on becoming a donor, visit www.BeTheMatch.org or call 1-800-MARROW-2.