A Perfect Place to Turn To: Family Raises Thousands for Francis House

In 2018, the lives of Paul Harrison and Kathryn Dainty were turned upside down when their six year old daughter Alex was diagnosed with a stage 4 medulloblastoma, a children’s brain tumour.

Described as a ‘bright, fun-loving child’ who ‘adored her friends and family and loved animals’, Alex was a talented artist and found comfort in drawing and painting.

She underwent four brain operations to remove tumours and several gruelling rounds of radiotherapy and chemotherapy.

Despite the best efforts of the medical teams, Alex died on July 4th 2024, aged 13.

“The awful disease took a lot away from her,” said dad Paul. “But never her spirit or love and affection for those closest to her. Alex was a kind and generous person who raised more than £800 for Brain Tumour Research by organising a cake sale at school just a few weeks before she died.”

In the weeks up to her death, Alex was cared for at home, made comfortable and supported by nurses from the Francis House homecare team, Macmillan and community nurses. The nurses managed her pain and nausea and end of life medications, even playing games and taking part in memory making activities.

“When Alex was taken ill, the nurses came out every day to see her. They managed her symptoms and it was invaluable because we couldn’t have coped with that. We also didn’t want her dying in hospital so when she did die we came straight to Francis House and their special facilities,” Paul said.

Francis House Children’s Hospice provides care and support to the families of children and young people with life-limiting and life-threatening conditions.

Families are referred to the hospice in Didsbury with a range of serious health conditions; when life is short Francis House aims to provide the best quality of life, supporting families throughout their child’s illness and death.

Francis House has three Rainbow Rooms that are specially cooled rooms that allow the young person to remain at the hospice after death and until the funeral. The bedrooms and adjoining lounges give families space and privacy, allowing them to say their goodbyes.

“I had heard of Francis House and known about it for years,” said Paul. “But I never knew the Rainbow Room was there, I never really wanted to think about that sort of facility either. But when we needed it, it was there, and I don’t know what we’d have done otherwise.

“It’s an absolutely fantastic facility at the point you need it the most. We were welcomed with open arms and Kathryn and I were there for almost a month. We were looked after and had a flat to ourselves. They fed us three times a day and we could have with us whoever we wanted, uncles and aunts, grandparents, they all stayed over. Those three weeks were absolutely crucial and also for our sanity, because you don’t want to cope with these things at the best of times.

“Francis House was the perfect place to turn to. Even though we didn’t do it beforehand when we could have done, we were grateful that they were there when needed.”

In the months after Alex’s death, Paul and Kathryn continued to access support from Francis House through the bereavement support services.

It was on a return visit that Paul spotted a poster in the reception area for a fundraising walk in Cheshire.

Paul said: “The walk was taking place on what would have been Alex’s 14th birthday, June 22. I thought we’ve got to do this it just seemed perfect. As there was more than one option to walk, some of Alex’s school friends could come along. It was really inclusive and with more coming to do it, more money could be raised.”

On Sunday, June 22, Paul and Kathryn, together with 35 friends and family, plus a large contingent from Heaton Moor Rugby Club, took part in the Francis House Cheshire Three Peaks Challenge walking from Tegg’s Nose Country Park in Macclesfield on either a 13.6 mile or a 6.5 mile route.

“The walk was great, we really enjoyed it,” said Paul. “Alex wasn’t a huge fan of walking up hills but she loved cake, and we had a birthday picnic at the end, which she would have loved.”

“We would like to thank everyone who joined us on the walk or donated in a fitting way to celebrate Alex’s birthday. We are incredibly proud of the huge amount of money people have raised in Alex’s name. Francis House is a fitting charity as they cared for Alex at home while she was dying, coming to our house to make sure she was comfortable and pain-free.

“They also helped us as a family after Alex’s death and we are still accessing their services, and we will always be grateful for that.”

The sponsored walk raised more than £6,000 for the hospice, plus another £4,000 through Alex’s funeral, bike rides and half marathons.

The Cheshire Three Peaks walk takes place every June. For more information visit here.