A MUM whose son has one of the world’s rarest genetic conditions has urged the NHS to give him the gift of hearing before Christmas.
Little Zac Clark, 6, is one of just 80 people in the world, and the only person in Scotland, who has Riboflavin Transporter deficiency (RTD) which affects his mobility, hearing, speech and sight.
Until he was three years old, Castlemilk lad Zac looked and acted like any other child.
He could walk, run and play, see, hear and talk - things he is now virtually unable to do.
In May 2013, when Zac was just 3, his parents Kimberley, 27, and Pat, 30, began noticing he walked with a wider stance than other kids, and his eyes seemed to flicker, unable to stay focused on one object for any length of time.
Read more: Inspirational young people who have overcome odds are shortlisted for The Prince’s Trust Awards
After years of scans, blood tests and misdiagnoses, the family finally received confirmation that Zac had RTD in January this year and thought they were finally on their way to getting the right help for him.
They visited the specialist Cochlear Implant unit at Crosshouse hospital in the hope of getting implants for Zac, which mum Kimberley said would greatly improve his quality of life.
However medics disagreed and refused to implant the youngster, saying he would not be able to make use of any extra sound he could hear.
Cochlear implants don’t act like hearing aids, which amplify sound; instead the electronic device replaces the damaged part of the inner ear, giving sound signals to the brain.
Kimberley explained: “With Zac, he can hear noise but he can’t process it. When it reaches him it only sounds muffled, like white noise almost.
“ The implants might be able to help him distinguish sounds better. It would help us understand his needs more.”
Tearfully Kimberley explained how the family appealed the doctors’ decision but they were again rejected.
The mum-of-two said: “I just want the best for my son. He is being denied his basic right to be able to hear.
“ How can they decide that he wouldn’t benefit from the implants when there is nobody else in Scotland who has his condition?
“He might be able to get some of his speech back... We might even be able to hear him say ‘I love you’ again.”
Around the world, children in Australia, England and America have been given the implants, and scientific research states they can help improve speech perception.
Ava Joliffe, 10, from Preston, is one such child with RTD who has been given the implants, which her mum Laura said has made a huge difference to her life.
Read more: Inspirational young people who have overcome odds are shortlisted for The Prince’s Trust Awards
Laura, 45, said: “Ava was implanted in July 2015, and since then she has not only improved in the volume ranges she can hear at, but also the speech perception is now moving forward. She can answer to her name, and for the first time in 7 years she is now learning new words and accessing environmental sounds.
“It’s made a big difference to us all as she is now hearing the dog bark, the phone ring and her name being called.”
Lyndsay Fraser an ENT consultant at NHS Ayrshire and Arran said: "NHS Ayrshire and Arran provides a national cochlear implant service for profoundly deaf adults and children across Scotland.
"Each patient is assessed on an individual basis and all decisions are based on clinical guidelines and detailed complex criteria.
"Every patient who meets the criteria for a cochlear implant will receive one."
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules here