Son’s With Joubert Syndrome Inspires Family’s Fundraising Drive
March 24, 2013
A FUNDRAISING mission has been launched to help a Dafen toddler who is one of only four known Welsh sufferers of a rare brain condition.
Cameron Matthew Fulham is only 22 months old, but every day he copes with the ordeal that comes with having Joubert syndrome.Joubert syndrome is a rare brain malformation characterized by the absence or underdevelopment of the cerebellar vermis – an area of the brain that controls balance and coordination. The most common features of Joubert syndrome in infants include abnormally rapid breathing (hyperpnea), decreased muscle tone (hypotonia), jerky eye movements (oculomotor apraxia), mental retardation, and the inability to coordinate voluntary muscle movements (ataxia).
Now his family is throwing themselves into fundraising, hoping to be able to afford the facilities that will improve the development of their “happy sunshine chap.”
Sponsored walks, raffles, concerts, tabletop sales and much more should help raise money to enhance Cameron’s life as he grows.
His mum, Aimee Davies, 24, said: “When Cameron was born, he was taken into intensive care, and due to his respiratory problems, we have had him in and out of hospital regularly for the last two years.
“He sleeps with oxygen every night because with his condition he gets rapid breathing.
“I don’t know whether he is going to be on it for the rest of his life.”
Believed to be hereditary, Joubert syndrome affects the cerebellum at the back of the brain— which controls balance and co-ordination— and can lead young sufferers to have impaired motor skills, decreased muscle tone, breathing difficulties and delayed intellectual development.
Cameron’s condition means he needs expensive and cumbersome equipment, such as chairs and large cylinders of oxygen, but Miss Davies thinks his development would benefit from a sensory room.
“It would help with his sight and motor skills, but certain equipment can cost thousands of pounds,” she said.
“It would be very beneficial to him: with the Joubert’s, they need as much stimulation as possible.”
Sensory rooms use equipment that produces smells, sounds and light, while toys help with motor skills.
But to make their dream a reality, Cameron’s whole family is taking part in fundraising— everyone from his mum to his great-grandmother Merle.
The 68-year-old, of Swiss Valley, said: “You can’t help but fall in love with him. He brings a bit of sunshine to everybody and has a really good sense of humour, he is a happy sunshine chap. We have organised an Easter bonanza — we’ll have a raffle and we’ve got some really lovely prizes.
”There’ll be a tin stall, a toy stall, a bric-a-brac stall and much more.”
It takes place from 1:30 p.m. on Saturday, March 23, in St Barnabas Hall, Llewellyn Street.
Mrs Davies, who is heavily involved in a slimming club, has got her hopeful pound-shedders involved in the effort.
She said there were plans for a sponsored walk in June and a night of entertainment was planned at Calsonic Kansei Sports and Social Club. “Every little bit helps,” said Mrs Davies.
Despite Cameron’s fight with the condition, his mum is keen to raise awareness of his affliction and help a fledgling Joubert’s charity start.
She said: “I will be donating part of the money raised to a Joubert’s charity. They have to raise £5,000 to pay for their registration as a charity, so I’m trying to help them too.”
Read more at This is South Wales. Written by Llanelli Star.
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