When little Evelyn Law was just eight months old, out of the blue she suffered a cardiac arrest at her home in Corby.
Her brain was starved of oxygen and the resulting damage changed her life.
At a time when their world had been turned upside down, parents Claire and Alan turned to Rainbows Hospice for Children and Young People for support
Now Claire, 38, is taking on 13 half marathons to raise money for the children’s hospice that cares for her five-year-old-daughter.
She is working her way through an incredible challenge of running a half marathon every month, concluding with the Great North Run in September.
“Rainbows has massively helped us and it is great to be able to give something back,” said Claire. “Everything that happened with Evelyn was out of the blue. We were not expecting any of it.”
Back in 2016, it was was a normal day for Claire when Evelyn suddenly screamed and suffered a cardiac arrest at home. The ambulance station was close to their home so it took just four minutes for paramedics to arrive on the scene. They spent 45 minutes trying to get her heartbeat back.
Claire said: “After three weeks in intensive care, the doctors came to see us and talked about taking her off the ventilator. We were told that would be it; Rainbows was involved because of its end of life options. At the time, we didn’t know anything about Rainbows, we didn’t know if we wanted them to be involved and we didn’t want her moved from what we knew.”
But Evelyn showed what she's made of and continued to breathe without the aid of a ventilator. As part of the family’s transition from hospital to home, they all stayed at Rainbows for the weekend, which also coincided with Evelyn’s first birthday.
“We weren’t even sure that Evelyn was going to celebrate her first birthday at one point and the team at Rainbows made it so special for her," said Claire.
"They have been a massive support to us ever since.”
Although Evelyn can breathe on her own, the cardiac arrest left her with irreparable brain damage. She has her own ways of moving and communicating but she can’t walk and talk like her brother and sister. She needs a lot of care throughout the day and is also fed through a tube directly into her stomach.
“All of this is why Rainbows is so important for our family,” said Claire, who is also mum to Olivia, seven, and three-year-old Oscar.
“It is not just for Evelyn. We do the family fun days and Olivia is part of the Sibling Support Group, which is great for her to meet others in the same situation.”
In 2020, Olivia completed the #Rainbows5K, and cycled double the distance required, in honour of her sister. She raised £100 for the charity.
“We love Rainbows, it is a happy place and Evelyn gets spoilt rotten,” said Claire. “We knew Rainbows was special from the moment one of the Rainbows Family Support Nurses came to see us and it was nice to have someone to talk to that knew what we were going through.
“Evelyn usually stays on her own so we can do day trips and things with the other children and visit places where it wouldn’t be fair to take Evelyn. She is very clever and she knows Rainbows is a safe and happy place.
“I hope our story inspires others to maybe sign up to the Great North Run and support Rainbows and families like ours.”
Rainbows opened its doors in 1994 and is the only hospice of its kind in the East Midlands. It was founded by Gail and Harry Moore, whose daughter, Laura, died of Leukaemia in 1989. Laura's favourite thing in the world was a rainbow.
Rainbows only receives around 15 percent of government funding so public support means it can provide end of life care, symptom management, short breaks and respite care to hundreds of families from Leicestershire, Derbyshire, Nottinghamshire, Rutland, Northamptonshire and Lincolnshire. It can also be there to support parents and siblings through their bereavements
You can sign up for the Great North Run for Rainbows here.