Family’s campaign to give Cameron a voice
AWELSH schoolboy is one of only four people in Wales to have a rare condition that means his parents have never been able to hear him talk.
Seven-year-old Cameron Fulham, from Llanelli but living in Kidwelly, was just 16 months old when his family were told that he had Joubert syndrome.
The rare genetic condition affects the brain and causes various degrees of physical, mental and sometimes visual impairments and is caused when two parts of the brain do not develop completely during pregnancy due to a faulty gene.
It affects the back part of Cameron’s brain and has left him unable to speak, as well as with problems with his balance and breathing.
His mum, Aimee Evans, explained that Cameron was taken into special care at just two days old and that he stopped breathing.
“He wasn’t feeding properly or reaching any of the milestones,” the 29-year-old said.
“He couldn’t sit up and his head was rolling. He had an MRI at 11 months and at 16 months he was diagnosed with Joubert Syndrome. There are four known cases in Wales and 500 in the world.
“Cameron’s got no independence as we have to dress him and feed him. He depends on us 24/7.”
The Ysgol Heol Goffa pupil uses sign language to communicate while at home as well as a communication aid on a tablet that he takes out and about.
His mum added: “The rare genetic condition affects the back part of his brain so it affects his speech, balance, co-ordination, breathing and eyesight.
“Cameron can’t walk or talk and uses a communication aid and sign language. The tablet has special technology to help him communicate as there are different blocks so he can’t put sentences together.
“It’s quite frustrating as the only words he can say are ‘mum’, ‘bampa’, ‘yeah’ and ‘no’.
“He tries to tell you something and gets frustrated. Before the technology he would get so frustrated and annoyed that he would have a meltdown.
“There’s been a massive difference since he’s been using it. He signs in the house and then takes it out and about with us.
“He goes to Heol Goffa full-time and they help him with his speech.”
The family have recently had a lift installed in their Kidwelly home so that Cameron can get from the living room to his bedroom in his wheelchair.
They have also been raising money to be able to buy a specialist HKAFO device which acts as a standing frame to help to help Cameron get around and eventually walk unaided. “It would help him gain stability and balance,” Mrs Evans said.
“We’ve also been fundraising for a specialist bike for him too as he’s restricted to his wheelchair. The HKAFO stands for hips, knees, ankle and foot orthosis and costs around £1,200 while the bike is £1,300.”
A recent fundraising event saw the family raise £1,4000 bringing their total to £2,800.
■ To donate to the family, visit their fundraising page www.justgiving. com/crowd funding/aimee-evans-1.