21 Dec Joe’s making real progress, with the aid of a trike
SEEING how much 13-year-old Joe enjoys outings on his new trike brings just as much pleasure to his mother Catherine Rawes.
She’s watching his confidence build all the time on it and “it’s lovely to see”, she said.
Her son has progressed a long way, having been born with reticular dysgenesis which is a rare genetic disorder of the bone marrow.
Following his birth, he had to be rushed off to a sterile bubble then at the age of just seven weeks he underwent a bone marrow transplant.
Having overcome all that, Joe – like any young teenager – now wants to enjoy his freedom by getting out and about.
But he is also profoundly deaf and suffers from learning difficulties which mean he is not aware of potential risk.
A new trike, provided by the Sunshine Fund charity, has made a huge difference to outings with Catherine and it is boosting his confidence.
And Catherine is delighted to see his progress.
She tells how she had no idea while pregnant with Joe that there were any problems with her baby.
It was only when he was born that a blood test revealed his condition.
“He was premature so I thought he was just in special care for a bit of oxygen,” said Catherine.
“Then they took a blood test and found he had no white cells. Then came more and more blood tests.”
These revealed reticular dysgenesis, the worst form of severe combined immunodeficiency – known as SCID – which basically meant he was without an immune system and had to enter a sterile “bubble” at the former General Hospital in Newcastle.
In need of a bone marrow transplant, but with no match in the family, he received one from a donor umbilical cord which proved near-perfect. Two weeks of chemotherapy followed and finally, when Joe was six months old, Catherine was finally able to take him home to their home in Tynemouth, North Tyneside.
“SCID is incredibly rare and at the time they weren’t sure how to treat him,” she recalled.
“Not many children survive it. It can be a bit of guess work by doctors – but they guessed right!
“When he was seven there had been more research and they found children with it are born deaf.
“We’d thought his deafness was because of his treatments.”
Joe, who attends mainstream school with special needs support, has since had cochlea implants and can now speak, although he struggles with friendships as he can’t keep up with conversation.
A recent boost was joining the cast of Vera in an episode featuring a deaf boy which involved him signing.
And his confidence is now growing further, alongside his independence, thanks to his trike.
He would not enjoy walking, is not sporty and cannot ride a bicycle but Catherine found that when he tried out a trike at Center Parcs he loved it.
“He struggles with boundaries and safety,” said Catherine. “For example he was riding along a path there but didn’t acknowledge there were people on it. I stopped and luckily he crashed into me instead of them.”
It was his paediatricians who recommended she apply to the Sunshine Fund for a trike.
“They thought it would help with awareness and learning about safety and it has really benefitted him,” she said.
“It’s really nice because he’s so enthusiastic; it’s great to see.
“It’s a fun way of learning and he’s getting support through school too, with crossing roads.”
She added: “The charity makes a huge difference to children as it’s giving something which changes their lives.
“I’ve seen some of the other equipment it gives and how it makes a huge difference.
“Joe loves going out on his trike – we just try not to knock people over!”