Mum tells of her struggle in TV documentary
A NORTH Devon mum is to feature in a brand new BBC One television documentary highlighting the difficulties of bringing up a severely disabled chid. Last month, Julie Evett, 30, from Barnstaple, spent five days filming with influential children s charity
A NORTH Devon mum is to feature in a brand new BBC One television documentary highlighting the difficulties of bringing up a severely disabled chid.Last month, Julie Evett, 30, from Barnstaple, spent five days filming with influential children's charity campaigner Rosa Monckton, best friend of the late Princess Diana and a mother of a daughter with Down's Syndrome.The programme, which is expected to be screened later this year, will feature intimate accounts from a handful of families that have shared their experiences on camera.Julie's two-and-a-half-year-old daughter Rose suffers from an extremely rare epileptic condition that doctors have still to properly diagnose. The toddler, who is also blind and suffers from a muscle condition called hypotonia, has spentlong spells in hospital.Earlier this month, she was in London being seen by specialists at Great Ormond Street Hospital.Single mum Julie, who also has 11 and eight-year-old daughters, moved to Barnstaple from Lincolnshire in February to be near her family. At the same time, she featured in a Gazette report about the lack of lack of specialist epilepsy nurse in North Devon.She has had to give up her teacher training to give her daughter around-the-clock one-to-one care, and is the first to admit that life bringing up Rose has been - at times - a desperate struggle. "I've gone through two-and-a-half years of hell, but have promised myself that I'd try and use the time to raise awareness of families in my position," she said."Taking part in the documentary was a huge thing for me to do; the production company saw a newpaper article about Rose and I got a phone call out of the blue asking whether I'd like to be involved.Julie said that the documentary would reveal the postcode lottery that parents have to face in terms of the special care available to them."Having recently moved from one county to another, it is definitely something I can identify with," she said."Although there is no epilepsy care nurse in North Devon, the care, respite and support here has been excellent."The staff at the Caroline Thorpe ward at North Devon District Hospital have been fantastic; as have the Joint Agency Team here, which has allocated us our own Key Worker and given us access to a whole support network of facilities, groups, occupational therapists, physiotherapists and speech language and vision specialists."Even small things like going to Rock Park and finding a disabled child's swing for the first time has made a big difference to our lives and things that we can do as a family."Three weeks ago, the family spent its first weekend at the Children's Hospice South West at Fremington."We spent an amazing weekend as a family there," said Julie."I have never seen anything like it; I didn't even know places like that existed."It's like a home away from home; a really nice place for us to be and fantastic for Rose's older sisters to meet the siblings of other disabled children. The girls cried when we had to leave."In the three months the family has been in North Devon, Rose has also been benefiting from music therapy sessions at the Sticklepath Children's Centre.She has met children at the Step-by-Step group at Victoria House, she and has also been making good use of the swimming pool facilities at Pathfields School.Julie has also found valuable help through the North Devon's Epilepsy Action social group, which meets at Barnstaple library on the second Wednesday of each month. And while much of the support available has been specifically directed towards Rose, Julie said she had finally found access to counselling sessions that will give her vital one-to-one support."I'm still picking up the pieces of the last couple of years but I feel positive about the future," added Julie. "This time last year, I was so desperate, but the move to Devon is the best thing we have done."People here seem to have so much more time here to help us as a family. "Life is very difficult at times, but we are all very happy here.