A BRAVE little boy will head across the pond this summer for experimental proton beam therapy on a large brain tumour.
Courageous Guy Ryan has already had more than 20 operations and marathon bouts of chemotherapy since he was diagnosed with pilocytic astrocytoma shortly after his first birthday.
We were just devastated, our whole family was in bits. He was so healthy and happy. He then got rushed in to have his first operation where they decide not to remove the whole tumour but just take a big chunk of it outGuy’s mum Michelle
The six-year-old is now preparing for a nine-week stay in the US to have proton beam therapy this summer but is dependent on the outcome of further surgery to try to remove some of the tumour at the Royal Manchester Children’s Hospital in May.
His parents are now desperately fund-raising to cover the cost of Guy, his mum Michelle and grandma Lynn O’Donnell living in either Oklahoma or Jacksonville for almost two and a half months.
Michelle says Guy was diagnosed with the tumour following a series of seizures and has had to endure an almost constant round of hospital visits and operations ever since.
Michelle, 32, said: “A few weeks before he turned one he was taken ill and would have a seizure or just lie on the floor and become unresponsive. His face also started turning blue.
“Salford Royal Hospital told us to film a seizure so they could see what was happening and we were transferred to the Royal Manchester Children’s Hospital. We were told he was having epileptic seizures and the diagnosis of the tumour came the following day.
“We were just devastated, our whole family was in bits. He was so healthy and happy. He then got rushed in to have his first operation where they decide not to remove the whole tumour but just take a big chunk of it out.”
Following the first operation the tumour began to grow back, leading to an 18-month stint of chemotherapy which gave Guy around six months before the lump started to increase in size again.
Further operations followed in March and July 2012, with the latter bout of surgery leaving him with growth hormone problems. The tumour began to grow again in November 2013 and on New Year’s Eve he started another 70-week chemotherapy programme he is still in the process of completing.
The plucky youngster, who lives in Astley, also made history during his treatment by becoming the first patient to be operated on in the Royal Manchester Children’s Hospital’s new theatre.
He will go under the surgeons’ instruments once again in May but the operation could be limited as the tumour is growing close to the brain stem and has several blood vessels running through it.
If that process goes well he will travel to the US for the proton beam therapy, which uses a stream of charged particles to freeze the tumour and may prevent it from growing until later in life.
Michelle says Guy has remained cheerful despite his lengthy medical ordeal and spoke of her pride in how he has handled the difficult situation.
She said: “He’s really quite good with it because he doesn’t really know any different. He’s been going to the hospital since he was one and all the staff have known him since he was a baby.
“When you go to the hospital you hear kids crying because they are so frightened, but Guy handles it brilliantly.
“The proton beam therapy could mean the tumour will only grow back later in life or it could start to grow back when Guy starts the growth hormones again. “It’s a risk but it’s one we’ve got to take really. I think Guy is just excited about going on a plane, he’s just not fazed by it at all.”
The tumour has had a serious affect on Guy’s life as he has little sensation or strength in his right hand, can only walk short distances and suffers from some memory problems.
He attends St Ambrose Barlow Primary School where he receives one-to-one assistance with his lessons and getting around the school.
The family is currently fund-raising for the stay in America and so Guy’s dad Matt, 34, and brother Jack, 10, can fly over to visit them during the proton beam therapy.
Firefighters at Leigh station have already donated half the proceeds of a car wash and one of Michelle’s friends has signed up for a sponsored silence.
To find out more or donate, visit www.gofundme.com/qpart3