By Revd David Ireland, Chief Executive, Francis House Children’s Hospice.
Friday 21st June 2019
Families can enjoy all the facilities at Francis House.
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 and Dantay along with members of the care team in the newly built cinema room at Francis House.
Being able to enjoy a family activity together is a rarity for the family since Tehyah suffered a series of mini strokes aged three-and-a-half years old.
The newly built cinema room is just one of the incredible range of facilities including a hydrotherapy pool, multi-sensory rooms and soft play areas that all the family can enjoy together.
Dad Aaron describes how the children count down the days until they are booked to come for respite stays as ‘waiting for Christmas’.
The family from Saddleworth, Oldham, including mum Sam and one-year-old Tayon, have been supported by Francis House for more than three years.
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, and doing everything they can to keep her comfortable.
Tehyah can no longer walk, talk or feed herself and Sam admits to ‘living in fear’ when she is not with her. But the one place that Sam can relax is Francis House.
"As a parent you naturally want to treat your children the same, but we can’t since her illness. Here there are people and things for every single one of them."mum Sam
“When we come here, we don’t feel guilty because they are all happy and having a great time,” added Sam.
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.
Aaron said: “Due to her medical needs there isn’t much we can all do together as a family. The kids love coming to Francis House because there are no boundaries and we don’t have to all be together.”
“Francis House adds to every aspect of your life. Aaliyah now has a friend through the hospice. The kids at school don’t really understand what it’s like to have a sibling with a life-limiting condition,” added Aaron.
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.
With the birth of Tayon in summer 2018, a new life has entered the family. “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.” added Sam.
“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."Dad Aaron