The Solan-Clarke family have been supported by Francis House Children’s Hospice in Didsbury for over three years, after daughter Tehyah suffered a series of mini strokes when she was just three- years old. Here they tell us how the hospice makes it possible for them to enjoy quality time together.
Movie sound effects surround the two children sitting cross-legged eating snacks and gazing up at the big screen.
From the comfort of a specially adapted bed, eight-year-old Tehyah joins her siblings Aaliyah, 9, and Dantay, 7, along with members of the care team in the newly built cinema room at Francis House Children’s Hospice.
Being able to enjoy an activity together is a rarity for the Solan-Clarke family since Tehyah suffered a series of mini strokes when she was just three-and-a-half years old, and spent months in hospital in an induced coma.
The newly built cinema room is just one of the facilities the hospice has that enables families to enjoy time together, along with a hydrotherapy pool, creative therapy and soft play areas.
Dad Aaron Clarke describes how the children count down the days until they are booked to come for respite stays like ‘waiting for Christmas’.
The severity of Tehyah’s condition means that her parents have completely adapted their lives and now cope daily with oxygen, medicines, suction and feeding pumps, doing everything they can to keep her comfortable.
Tehyah can no longer walk, talk or feed herself, and mum Sam admits to ‘living in fear’ when she is not with her. But the one place that she can relax is Francis House. Sam explains:
“As a parent you naturally want to treat your children the same, but we can’t because of her illness. Here there are people and things for every single one of them.
“When we come here, we don’t feel guilty because they are all happy and having a great time.”
Dad Aaron adds:
“Due to her medical needs there isn’t much we can all do together as a family. 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.”
Two weeks of respite
The whole family enjoys fourteen nights respite spaced over three or four visits a year and Aaron and Sam stay in one of the family flats.
Meeting other parents is a big help, and families pass on tips about places that are 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. 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.”
Support for siblings
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 single 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.
In summer 2018 Sam gave birth to son Tayon. “I’ve found it so hard to deal with what happened to Tehyah even though it was nearly five years ago, but Tayon has brought so much joy into our lives and made my life a lot happier,” she adds.
For more information visit Francis House Children’s Hospice