Hospice makes me a better mum

14 December 2018 | West and South West England

Children's Hospital South West - Amanda Gallagher

Charlton Farm Hospice in Somerset is helping children with life-limiting diseases and their families.

Making the most of short and precious lives. That is what Amanda Gallagher, corporate partnerships fundraiser of Charlton Farm Hospice in Somerset, says they do best. “When people think of a hospice, they think of it as somewhere as a place somebody comes to die.”

“Of course, we do offer end of life care, but about 85% of our work is about respite, giving families a safe and comforting place to enjoy time with the whole family, not just the child who is in need.”

The hospice has care teams in place 24 hours a day, 365 days a year and costs £3.5 million a year to run. They offer invaluable respite care for 12 days a year to children. Children’s Hospice South West operates this and two other hospices, Little Bridge House in Devon, and Little Harbour in Cornwall. The charity has been chosen as a TSB Local Charity Partner by the bank’s Bristol Bedminster branch.

“We make sure we tailor our services to every different family, that they get exactly what they need from coming here,” explains Amanda,32. “Some families come and want us to take over the medical needs for the sick child, others want to carry on doing it themselves, but just want a holiday almost.

“We’ve been compared to Center Parcs, which is just an amazing compliment. We have eight children’s bedrooms here, and family accommodation as well so we can have up to eight families here at a time,” says Amanda. “There’s an amazing kitchen, dining room and living area. The families can spend time with others who are going through a similar situation as them.”

Naomi Aldridge is just one mum helped. When she gave birth to baby Ethan she was ecstatic. It was only four days later that doctors realised something was seriously wrong with her beautiful son.

“I had the perfect pregnancy, so it was a total shock to find out that he had a very rare genetic disorder called ARX which causes epileptic seizures and developmental delay,” recalls Naomi.

Ethan is now 8 years old, but has the developmental age of a six-month old child. He can not walk or talk although he can communicate with his eyes. Life can be tough for Naomi, 32, her partner and family, with Ethan needing critical care 24-hours a day. But it is made a little easier by the Charlton Farm Hospice.

Naomi says the hospice has been a lifeline. “He is the happiest child ever and always smiling, everyone at the hospice loves Ethan. But for me, I can honestly say it has saved our lives. Day to day can be very stressful, but when we come here the nurses take over. I can come and be a mum to Ethan, but the nurses do all the work and let me sleep at night. I come away feeling refreshed and renewed, ready for the fight ahead.”

Each hospice has a dedicated sibling team who take them on day trips or are there to help them through everything that’s going on. “Some parents want siblings to know everything, some don’t and we respect their wishes,” says Amanda. “We have a tree house, hydrotherapy pool, play area, even a winter garden room for children that can’t go outside.”

The hospice only gets 17% of the money they need from government funding, so fundraising is vital for the work they do. “Lots of people assume people come to us for the last days of a child’s life,” says Amanda. “But on average, a family uses us for eight years. We have a beautiful room, almost chapel like, for when that time comes. They can spend as much time with their child as they want. And they often come back to us afterwards. We’re like an extended family and people often make friends for life.

“People often assume it’s just children with cancer that come here, but we see children with all kinds of different conditions, some are undiagnosed.”

Amanda says they keep talking to the families, so they know exactly what they need or want the next time they visit. “We very much want this to be a place they come to make happy memories, ones they can cherish forever,” she says.

This is what the hospice does best, Naomi agrees. “We had a great day out taking the children ice-skating recently. Ethan’s face lit up. I don’t know what I would do without the team here - they are all amazing. I now have a 5 month old daughter Florence and I am with her at the hospice now.

“Being here means we can do things like go swimming with Ethan, but I don’t have to worry about changing him or anything like that. I can just enjoy our time together stress-free. And if I want to take some time out with Florence, or go shopping, I can do that too for these short precious days. It helps make me a better mum.”

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