Dad to run half marathon in memory of cherished daughter
A loving dad is to run the streets of Bath to raise money for the children’s hospice that cared for his daughter for nearly a decade.
Jesse, supported by wife Sue and family and friends, is to take part in the city’s half marathon next March to raise money for Children’s Hospice South West (CHSW) in memory of their daughter Ella.
After enjoying a problem free pregnancy, Jesse and Sue welcomed baby Ella to the family in 2011. Soon after she was born, the couple realised that little Ella was not hitting her expected milestones.
“Initially we just thought it was a case that every child develops differently and at their own pace, but Ella couldn’t sit up on her own and couldn’t grip anything. She struggled to even roll over,” said Jesse.
“We continued to try and manage on our own, but often were only getting one or two hours sleep a night.”
Ella was diagnosed with dystonia which causes involuntary muscle contractions, forcing the body into abnormal, sometimes painful movements and positions. Although the family were receiving physiotherapy support for their daughter who was under the care of neurologists, Ella continued to struggle to put on weight.
Aged 2, the couple took Ella back into hospital where medics spent 6 months trying to manage medication to help her symptoms.
Further testing revealed that Ella had a genetic mutation so rare that she was the only person in the world known to have it. Since Ella’s diagnosis, only 5 people globally have been identified as having the same genetic mutation.
The family were referred to Children’s Hospice South West’s Charlton Farm when Ella was 2 years old.
“Ella needed around the clock care,” said Jesse. “She had dystonia throughout her whole body which caused her pain. It was exhausting for all of us.”
Despite this Ella was full of beans and had a lovely smile and such an infectious laugh. Everyone used to say she was the most verbal, non verbal child they had ever met. Although she couldn’t speak, she most certainly made herself heard.
Jesse and Sue said the referral to Charlton Farm was lifechanging for them as a family. “We were not really getting any professional help and were trying to soldier on,” said Jesse.
The support and care we received as a family from Charlton Farm made a huge, positive difference to us all.
“Having the team there with its expertise to help us make decisions about Ella’s care to having the emotional support for all of us was just incredible.”
“It gave us time to relax, even if that was just a simple thing like watching telly sat on the bed or actually having a proper sleep, knowing that Ella was being cared for.”
“When we used to say to Ella that we were going to Charlton Farm, her face used to light up. She loved it there.”
The family, from Failand, continued to care for Ella at home. Charlton Farm continued to support them, making visits to the family home during the covid pandemic to avoid Ella returning to hospital.
“The team at Charlton Farm was always there at the end of the phone, whenever we needed them,” said Jesse.
Ella then endured another lengthy spell in hospital in 2022 with doctors trying to find medication to help her condition. The family returned home where they enjoyed Christmas together.
“Ella was the best she had been in ages and we enjoyed Christmas together as a family.”
One morning in February 2023, Ella took a turn for the worse.
“Ella had spent the Saturday morning with her grandma and then we sat and watched the Saturday morning football together, which she loved, and then some films.”
“Ella was really chilled, but then we became concerned she was just too chilled so we checked her oxygen levels.” Ella’s oxygen levels had become very low and Jesse and Sue gave her some oxygen to help.
“We thought she had picked up a cold and that was why she was under the weather. But we felt it was within the normal realms for Ella.” The following morning, Sue’s mum went to check on Ella. “We could see she was still not well and called 999,” said Jesse.
Ella was taken to hospital where doctors said she had developed sepsis, her lungs were failing and there was nothing else they could do for her.
Ella,11, died in Sue and Jesse’s arms on February 19. The family spent the next 5 days at Charlton Farm.
“We all got to Charlton Farm and the team just put their arms around us,” said Jesse.
That time allowed us and the family to spend time with Ella, for us all to say our goodbyes and to start the process of dealing with what had happened.
“The hospice has continued to support us all following her death.”
Jesse originally took up running to help him stay fit and well to look after Ella. In a space of 2 years he completed 40 runs, raising thousands for charitable causes including CHSW.
Running has helped me physically and mentally, and when I am out running I always feel that Ella is with me.
“The money I raise will help other families, just like us. Charlton Farm not only looks after the affected child, but the parents and the siblings
“Every penny raised will go to support these services and ensure they are there for other families like us in the future.”
CHSW still has a number of places available at the Bath Half on March 16 for people to want to run and raise money for the charity. For £40, and a suggested minimum sponsorship of £225, people are being invited to join Team CHSW and run to help local children and young people living with life limiting conditions.