There a so many bizarre health conditions in the world and one-year-old Charlie Wagstaff is suffering from one of such strange and rare condition. The little boy suffers from a genetic disorder known as Congenital Central Hypoventilation a very rare condition that puts him at risk of dying every time he sleeps.
Charlie’s condition which affects how his central nervous system controls sleeping is so rare that it has only been seen in 1000 people worldwide and just 70 reported cases in the United Kingdom. The condition required the one-year-old to always wear a mask attached to a ventilator if he is to stay alive anytime he takes a nap.
The problem, however, is that his current mask is stunting his development and causing facial deformities for the boy. To solve the problem, Charlie’s parents had taken him to Denmark to see doctors who were working to develop a bespoke breathing mash that will allow his face to grow normally, but their trip had been stalled because they had exceeded their £1,000 target. However, a heart-breaking photo of the boy which was posted online was able to help raise enough money for the boy’s treatment in Denmark.
When Angie Ryan and Steve Pratt who are landlords at a pub Charlie’s parents use to frequent heard about the boy’s sad story they deuced to help by setting up an online fundraising page for Charlie to help his parents with the boy’s treatment cost. On the Justgiving page they set up for Charlie, Ms Ryan wrote:
“We were heartbroken to hear of Charlie’s condition and can only imagine the struggles his mum and dad have been through. It is so rare that only 1,000 people in the world have been diagnosed with this lifelong and life-threatening condition, which has completely turned his mum and dad’s life around. Charlie’s mask is starting to cause him facial deformities, so any money raised will go towards a bespoke mask which will hopefully allow his face to develop properly.”
Mr Pratt then went on to explain his first encounter with Charlie and his parent. He said the boy had a lot of tubes and equipment which told anyone of what kind of ordeal they had been going through to keep the boy alive. “I was upset hearing about what he goes through and wanted to do something.”
One enquiry, Charlie’s parents told them what was wrong with the boy and the fact that he needs a new mask to be able to breathe well at night which was what inspired them to create the fundraiser page for the boy.
In addition to the online fundraiser, Mr Pratt is also setting up a Neil Diamond night at the club on December 1 to raise funds for Charlie further.
“The community always get involved when we do our events,’ he said People are so generous with donating raffle prizes, and we have sold nearly every ticket. I think people like seeing the money going to worthy families.”
Through the help of Angie Ryan and Steve Pratt. Charlie’s parent has been able to raise the money needed to get the boy a bespoke breathing mask. While there is no known cure for the condition yet, ventilation support like what Charlie is getting is their best bet to keep him alive and give him a chance at fairly normal development.