LIVING in an almost silent world must be terribly isolating. But for parents of hearing impaired youngsters their children's isolation can be matched, equally, by their own.

That is why a Bolton mum has set up a support group - to help other parents escape the loneliness they feel when they discover their child cannot hear properly.

Support group organiser Christine McKeown's family was dealt a particularly cruel blow.

It is devastating enough to discover one of your children has a rare form of hearing impairment but how much crueller to find out that your second son has inherited the condition too.

But rather than feeling sorry for herself - and her two sons - Christine has set about making life as fulfilling as possible for her boys and is determined to help other families in Bolton, like her own, with her new organisation, Bolton's Ear 4 Kidz.

Christine, aged 41, and 43-year-old husband Pete were unsuspecting carriers of a faulty gene which produces Pendred Syndrome.

This little known syndrome causes severe hearing loss and serious balance problems.

A bang to the head - and what young boy has not had one of those? - could mean the boys losing their hearing completely.

Both Danny, aged 13, and Nick, who is 10, have to remain bed-ridden when their balance is affected. They can not go to school when the problem arises as any movement could cause what little hearing they have to completely disappear.

The condition is so rare that Christine is often able to tell doctors far more about it than doctors can tell her. "I am an expert in the condition because I live with it on a daily basis," she said.

The McKeown home, in Smithills, is just like any other family home though. The boys love playing sport, surfing the internet and having fun.

Both boys love music and although their hearing is impaired they can hold an excellent conversation.

They have not been wrapped in cotton-wool - apart from when they have a bang to the head and need bed-rest - and they are just like any other boisterous boys.

The boys suffer from "fluctuations" when their hearing comes and goes in waves but, with the help of hearing aids, they do have good hearing.

They do not use sign-language - but Christine is set to learn it and teach the boys.

"When they were little the advice was not to teach them sign-language and to let them lip-read. Now I feel they should be able to have sign-language if they want it. They should have the choice," said Christine.

This idea that hearing impaired children should have choice is what drove Christine to set up a support group for local families. Although she wants her boys to have as normal a life as is possible she also thinks they should have friends who can understand what they are going through.

Although Christine is pleased her boys are able to be part of a hearing society, she thinks it equally important for these youngsters to have the opportunity to mix with other children who have similar issues to deal with.

"I realised that my children were growing up with hearing friends. They go to mainstream school and were not given the opportunity to meet up with other children who were hearing impaired.

"I set up the group to give them a choice," she said.

She hopes Bolton's Ear 4 Kidz will give hearing impaired children the chance to be with other youngsters who understand what they are going through.

Her wealth of knowledge will also be invaluable to parents who are unaware of benefits they may well be entitled to.

"There are parents of hearing impaired children who don't realise they can claim a carer's allowance. They think of themselves as a mum, not a carer, but they may well be entitled to that financial help," she said.

The boys' condition was not discovered immediately and this is a common problem with Pendred.

Imbalance became a problem when Danny was 18-months-old and the toddler was tested for a variety of conditions, including having x-rays of his legs.

When Nick was born he was thought to have escaped the condition. Yet again, at 18-months-old, it became obvious there was a problem and by now his parents knew what that problem was.

Pendred is much more easily detected now than it was when Christine's boys were young.

There is a blood test which will determine if a child has the condition - it took MRI scans to determine that for the McKeown boys.

The Bolton support group is starting to take shape - it has only been in existence for a few months - and has already attracted the interest of families who were feeling isolated and alone.

They meet at Bolton Lads and Girls Club and have recently completed a fun music project which was enjoyed by all the children.

  • Anyone interested in finding out more can contact Christine on 01204 406918 or 07971 439584 or by email at christine.mckeown1@ntlworld.com