6-year-old Noble needs CHIP
Noble, 6 years old, is described as “an old soul,” and a patient child that displays great joy. Since birth, Noble has always done his best and tried his hardest to overcome all the difficult things life has tossed his way. At just 3 days old, Noble was diagnosed with Prader-Willi Syndrome (PWS) after being taken to the neonatal intensive care unit.
His mom, Crystal, describes how she and his dad, Jameson, were “devastated” when they were told of the diagnosis.
“Because PWS is so rare (about 1/15,000 live births) the information available to us via the internet was very outdated and did not provide current treatment recommendations or any new standards of care,” explained Crystal. “At first, we only had the internet to inform us — and the diagnosis seemed very bleak and truthfully, very horrifying.”
They credit the Prader-Willi Syndrome Clinic at Nationwide Children's Hospital for easing their concerns and with helping them connect with other families around the world. Noble currently endures biannual blood draws and receives a shot every day. While not ideal for any child, Noble knows that this is part of his daily routine and explains to all he meets that he smiles and thinks of something happy every time "because that makes the prick real quick."
He has developed a close relationship with all of his doctors, and is joyful about going to see each one. He looks forward to seeing his medical team, works hard in all his therapy appointments, and rarely has a bad day.
However, as a recipient of the Children’s Health Insurance Program (CHIP), the care Noble receives currently is in jeopardy.
“If CHIP is not renewed, Noble will most likely lose coverage,” explained Crystal. “With the costs of our high deductible employer plan, we would not be able to afford Noble's physical, occupational and speech therapies. Our insurance would only pay for 12 of these therapies a year — Noble utilizes 150.”
According to Crystal, if Noble does not have access to these therapies, his performance in school will likely suffer. These services help him to keep pace with his first grade curriculum and develop strategies for better and increased learning. Considering that he is now beginning full-day school, the therapies are more important than ever.
Noble has a proclivity for public speaking and practices giving speeches and preaching from his own pulpit. He enjoys practicing new techniques, changing the cadence of his voice, and expounding on simple subjects like being a good friend, leading a kindergarten classroom, and preaching to a church congregation. Noble is funny, witty and mature. His future will no doubt include some sort of public presence.