Emma Hadn't Slept Properly Her Entire Life; Emma Roberts, 15, of Ross-on-Wye, Is Able to Enjoy a Full Night's Sleep for the First Time in Her Life since Being Treated at Birmingham Children's Hospital, Where the Sunday Mercury's Give A Child Health Fund Is Funding a New PS500,000 Respiratory Centre. Her Father Tim, 51, a Chimney Repairman, Tells ZOE CHAMBERLAIN Why the Help on Offer Is So Important
EMMA weighed just under 6lb when she was born, even though she was overdue. She then developed lots of chest infections, so we were in and out of hospital with her.
She had to be tube-fed and she lay on her one side for so long that her face became squashed.
Even today her face is quite triangular, but she hides it well with her long hair.
Her elder brother Kyle was only 15 months when she was born, and Emma's need for care was hard for him.
Unfortunately Kyle and Emma's mother and I split up out before Emma was one. I think she found it difficult to cope.
I'd lie in bed listening to Emma struggling to breathe and think 'Should I take her to hospital or not?' I had good support from my family around me but they couldn't be there 24/7. I worked in warehouses and as a labourer. I tried to carry on working to bring in money but I had to give up my job to give the children the attention they needed.
When she was around 12 months old, Emma was diagnosed with Dubowitz Syndrome, a rare genetic disorder.
I was shocked when I found out all the different aspects of her illness.
There's a one in a million chance of both parents carrying the same disorder and doctors haven't identified which gene carries it.
Emma's mum and I had no idea we were carriers before we had Emma.
It hasn't affected Kyle at all. But looking back now, we can see some elements of the condition in family members on both sides. I had an aunt who used to behave strangely. When things didn't go her way, she reacted violently.
I realised Emma was like her but, because I knew what was going on, I was able to reeducate her not to act like that.
Our local hospital quickly referred us to Birmingham Children's Hospital, thankfully.
Words cannot express how good they have been.
Emma had sleep problems because she couldn't breathe well and she suffered from eczema and asthma.
She went to a special school because she fell so far behind in her development.
Emma didn't mix well, she didn't do the social stuff. She didn't think you should talk to, or touch, anyone.
One day I stood behind her talking and she didn't respond to me, so I made a really loud noise - and she still didn't respond.
It was really worrying.
The health visitor referred us to an audiologist who told us that Emma had severe hearing difficulties.
We could have made 90 decibels of noise two to three inches behind her ear and she wouldn't have heard.
The reason we hadn't realised was that she had taught herself to lip read.
The specialist said she was very accomplished at it. It shows how bright she is. We tried to give her conventional hearing aids but they didn't work. So she had boneanchored hearing aids, which are titanium pegs implanted into her head.
I would have paid to see what happened next. When we came out of the audiology centre and it was like a whole new world had opened up to her.
She said 'I can hear that person talking over there', 'I heard the bus behind me and I've never heard that before.' As a result her confidence quickly grew. It was amazing. It helped her to become more independent.
As a result of her hearing problems, she couldn't annunciate properly. …