How the Cains can plan first holiday for four years.
The couple say Claire House has been a lifeline for themselves and daughter Alicia since they were put in touch with the hospice 12 months ago.
The three-year- old has the rare PEHO Syndrome and needs 24 hour care. She has spent most of her life in Alder Hey children's hospital and on constant oxygen.
The condition is so rare there are no support groups, and the Cains have found it useful to meet parents of other poorly children at the hospice.
Brian, 37, says: ``We trust Claire House with Alicia and we can't give a higher compliment than that. We love going there and we don't want toleave.
``We recommend the place to friends who often haven't heard of it. Even when you're not there, the staff call and ask how you're getting on.
``Alicia broke her leg earlier this year and they just said `bring her over'.They are great with her, and we're now hoping we can go away for a week next year.''
The Cains, from Woolton, proudly show off artwork and presents created by Alicia when she spends time at Claire House.
Mum Julie, 38, says: ``We go to Claire House at least three days a month. It's about trusting somebody with your child. At first it's difficult,but I'm glad we did.
``It's nice for us as well as Alicia. Much as we want to spend as much time as possible with her, we do want to spend time together as well.'' Alicia was born at Liverpool Women's hospital, but within hours she was in Alder Hey where she has lived ever since.
She comes home during the day, and has recently been spending a night or two at home as well. The couple plan to build an extension so Alicia can have her own bedroom and bathroom downstairs.
It took doctors two years to diagnose PEHO Syndrome, which causes severe seizures or fits, swelling of the hands and feet, floppiness and vision problems. Most sufferers do not live over the age of 15.
But Brian and Julie are determined that, however long they have, they will get their daughter the best help they can.
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|Publication:||Liverpool Echo (Liverpool, England)|
|Date:||Sep 22, 2003|
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