Most of us sit at our computers, on our phones, on our tablets, with our normal functioning fingers, hands, arms, elbows, shoulders and knees; tapping our functioning feet; sipping, chewing, swallowing whatever we want, never thinking twice about our chromosomal make-up.
For almost-3-year-old Tadgh Magee of Dublin, Ireland, none of this is his norm. His life has been one long discovery of new diagnosis, new symptoms, new surgeries and new setbacks. Tadgh is the only recorded person in the world to have the chromosomal disorder he has. The typical manner in which our bodies function are mostly foreign him.
In addition to or as a result of being the only known child in the world with a duplication short arm of chromosome 7 at band 7p14.3, precious little Tadgh is trying hard to make it through each day best he can. He is plagued with various heart, lung, brain and congenital disorders, body deformities, speech and sensory problems, was diagnosed with autism and speech delays, has an inability to feel pain normally, and a host of other medical conditions. When he cries he is unable to say why. In his situation there are so many abnormalities that it could be anything.
Tadgh’s daily life has been spent in and out of hospitals but there is nothing conclusive. He is under the care of numerous specialists who don’t consult with one another but rather contradict each other leaving his mother, Melissa, to connect all the dots on her own. She has so many questions for which there are currently no answers.
Melissa is neither a medical doctor nor researcher, but her last three years have been spent seeking help for her son. “I’ve rang all around the world. I rang Canada, I rang England, I rang America, I rang the NIH,” she says. “I keep hitting dead ends. Talks with Ireland’s Minister of Health proved useless as well.”
She visited the U.S. with Tadgh in February of this year so he could be fitted for a special T-Joe Brace to correct his chest deformity. While here she contacted the Children’s Hospital of Philadelphia to inquire about additional testing. She was told the initial cost would be $60,000 plus additional fees for admittance. “I just don’t have that kind of money,” she said.
Through Cherab, Lisa Geng is assembling a team of medical specialists, doctors and therapists, in Florida, who are offering their services free of charge so the Magee family can delve deeper into this miraculous boy and hopefully come up with more answers. All we need to do is get them here!
“Despite all these diagnosis Tadgh is the most loving little man. He is so funny and coming on in leaps and bounds. Unfortunately he keeps getting new diagnosis and I don’t know what will happen in the near future. I know I won’t ever find a cure and have accepted that Tadgh is my beautiful rare unique miracle baby but I would hope to find somebody with a duplication at 7p14.3.” –Melissa Magee
Melissa who lives in Ireland had shared the following cry for help on her personal Facebook page which has already been shared over 8 thousand time. One of the parents that shared it was Trish Peck, a mom from China has a therapist for her son who is originally from Ireland who saw Melissa’s cry for help for her son Tadgh and shared it with Trish, who then shared the following on the Cherab support group on Facebook where Lisa Geng helped find professionals in Florida like Dr. Aylin Ozdemire, and Dr. Renai Jonas willing to donate their time to help Also special thanks to writer/mom Nina Wolgelenter for writing up Tadgh’s story.
If you are a medical professional that is interested in helping Tadgh anywhere in the world please contact us.
Melissa needs help getting to the US, the flight for their family alone will be around 2 thousand US dollars. In addition any additional monies can go toward Tadgh’s medical fund. Please help if you can. Tadgh’s Gofundme account