“Ryan is 7 months old. He’s adorable he loves everyone that he comes across,” said his dad, Chris Cuffe. “He has a lot of friends here at Children’s. He’s been here five of the seven months he’s been alive.”
Ryan was diagnosed with IPEX syndrome, a rare disease that attacks the body and is fatal. To save his life, the Cuffes need a bone marrow transplant.
David DiCicco, Ryan’s uncle and his other firefighter colleagues hosted a bone marrow drive at their station to find potential donors. The test was a simple cheek swab and the attendees name was then registered with the national bone marrow donor list.
The family was overwhelmed by the response and hope that the boy gets his chance to live.
“It’s amazing,” said his mother, Stephanie Cuffe. “For what he’s been through, he’s just such a happy little boy. Everyone just keeping saying, ‘I can’t believe how great he looks with what he’s been through.’ He is, he’s just inspirational.”
Many of the donors did not even know the family personally.
Currently there are 18 matches for Ryan out of the 14 million donors.
“They don’t usually survive, but as grim as it was, we had a diagnosis and we could move forward and the treatment is a cure. The bone marrow is a cure, it’s not just a remission kind of a treatment so we have hope,” said Pat Falcione, Ryan’s grandmother.
His family hopes now that the drive will help other families who need the same kind of help.
“It’s hopefully to help another family in the future,” said Stephanie Cuffe. “Somebody before us maybe had a big drive and that’s where Ryan’s match is coming from. We just hope that we can do the same for another family.”
– Atula, Staff Writer
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Hi, take heart, 15 years ago I became the carer of a 18 month old boy, he was originally diagnosed with failure to thrive and cyclosporin responsive enteropathy. Over the years we have added Laryngeal papilloma’s, kidney failure, hypo-thyroidism, asthma, excema, eosophogitis, and recently rheumotoid arthritis.He also has overnight feeds through a button, of Neocate as he is allergic to dairy, eggs and fish. He is now 16 and a half, underweight (30kg) and the height of an eight year old, but he is alive, bright, bubbly, spoilt and loved very much. He was originally given a life span of two and has only just in the past 2 years been diagnosed with IPEX syndrome after DNA testing. Be positive- love can create many miracles, annoy the doctors and don’t be fobbed off that they know everything a parents gut instinct will tell you what needs to be done and you will learn to read the signs before symptoms show. I wish you the best in your search. Anna – Australia
You are amazing Anna. Thank you for your encouraging words for this family.
HELP! My 5 year grandson was diagnosed with IPEX — BMT recommended — met with local BMT team and immunologist who are tesing again — they don’t beliee it’s IPEX — he lives on only Neocate and pure rice products — other food trials have made him very sick — where did you get your IPEX diagnosis??