My Battle to Find the Right Support; THERE Seems to Be Support Groups and Charities for Every Illness These Days, but What If You Are the Parent of a Child Whose Symptons Don't Fit Any of the Accepted Illnesses? Where Can You Turn for Support? KAREN HAMBRIDGE Speaks to a Mum Who Battled against the System to Get Help for Two of Her Children and Who Found Support Thanks to a Unique Charity
Byline: KAREN HAMBRIDGE
SHARON LYCETT knows what it's like to feel isolated as a parent - and not just because you're at home all day changing nappies.
Two of the 36-year-old Bedworth mum's children have complex physical and educational difficulties. But neither child - 13-year-old Kayleigh and 11-year-old Nathan - can be pigeon-holed as having one specific condition.
It means any support, emotional or practical, is hard to come by as there is no single charity or social agency which can meet the needs of Sharon and her family.
So when she came across SWAN it seemed a Godsend.
SWAN - Syndromes Without a Name - is a charity set up to help raise awareness of children who suffer from undiagnosed disorders.
This year it is receiving funds as a guest charity from the Jeans for Genes Campaign.
And it was only by chance that Sharon, who lives with Kayleigh, Nathan and her other two children, Michaela, two and Kierian, 15, came across them.
She read a poster on a waiting room wall.
At the time Sharon was battling to get a diagnosis for Kayleigh and feeling woefully short of support.
Kayleigh had struggled in her development since birth and had not reached any of her baby milestones.
At three she was eventually referred to the Child Development Centre in Nuneaton where a week-long assessment concluded she had speech and language problems but would be able to attend mainstream school.
"She spent a year in mainstream school and absolutely hated it," remembered Sharon, a full-time mum who is doing a reflexology diploma at college.
"She just didn't achieve. She couldn't read or write, she didn't know what numbers or colours were. It was a daily battle to get her to school.
"She was wetting herself at school and the other children were making fun of her.
"I used to send her with several changes of clothes but the teachers said if she continued wetting after reception class they would refuse to have her."
Then Sharon applied for a parental statement and Kayleigh was transferred to Exhall Grange.
The difference was dramatic and after a year Kayleigh began to come out of her shell.
Persistence from Sharon also resulted in proper diagnosis of Kayleigh's difficulties. At six she was diagnosed with brain damage and at seven with dyspraxia and age eight with dyslexia.
During this time SWAN became a lifeline for Sharon.
"When I first contacted them it was so liberating to have someone to talk to who was willing to listen. …