A GREENFIELD mum with a severely disabled daughter has praised the invaluable respite care available to her family from a children’s hospice.
Tehyah Solan-Clarke was only three-and-a-half when she suffered a series of mini-strokes and spent months in hospital in an induced coma.
Now eight, Tehyah can no longer walk, talk or feed herself. Her condition means parents Sam Solan and Aaron Clarke have completely adapted their lives.
They now cope daily with oxygen, medicines, suction and feeding pumps.
Mother Sam admits to “living in fear” when she is not with her daughter – but the one place she can relax is Francis House.
The Hospice on Parrs Wood Road, Didsbury, has supported the Solan-Clarke family for three years.
“As a parent you naturally want to treat your children the same but we can’t since her illness,” added Sam, also mum to Aaliyah, 9, Dantay, 7, and 12-month-old Tayon.
“When we come here, we don’t feel guilty because they are all happy and having a great time.”
A newly built cinema room is just one of the range of hospice’s facilities including a hydrotherapy pool, creative therapy and soft play areas that all the family can enjoy together.
Dad Aaron Clarke describes how the children count the days until they are booked to come for respite stays like ‘waiting for Christmas’.
“Due to Tehyah’s medical needs there isn’t much we can all do together as a family,” he said.
“On a visit to the zoo we couldn’t go on a boat ride because of her wheelchair.
“The kids love coming to Francis House because there are no boundaries and we don’t have to all be together.”
The whole family enjoys 14 nights respite spaced over three or four visits a year.
Meeting other parents is a big help and families pass on tips about places adapted for wheelchairs.
“Instead of because of Tehyah we can’t do stuff, it’s because of her that they get to do fun things,” said Aaron.
“They can go in the craft room and the playroom together but equally they can go off and have some freedom.
“Francis House adds to every aspect of your life. Aaliyah now has a friend through the hospice.
“The kids at school don’t understand what it’s like to have a sibling with a life-limiting condition.”
Aaliyah and Dantay have joined the Seasons group, where they meet other young people whose siblings use the hospice.
Once a month at the weekend, they spend a few hours having fun with the staff and their friends, taking part in painting parties, exploring the wildlife in the garden and trips out.
Four doctors provide cover at Francis House seven days a week.
A doctor visits the hospice every day and families can discuss any concerns that they have about the child’s medical condition as well as getting practical help making appointments and referrals.
“I’ve found it so hard to deal with what happened to Tehyah even though it was nearly five years ago,“ added Sam.
“But Tayon has brought so much joy into our lives and made my life a lot happier.”
• To donate to Francis House visit their website: www.francishouse.org.uk