Evelyn was just eight months old when she had a cardiac arrest at home, leaving her brain starved of oxygen and resulting in damage which has changed her life.
At a time when their world had been turned upside down, parents Claire and Alan, turned to Rainbows for support.
“Rainbows has massively helped us,” said Claire. “Everything that happened with Evelyn was out of the blue. We were not expecting any of it.”
“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 proved medics wrong 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 our hospice 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. 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 (six) and two-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 May, Olivia completed our #Rainbows5K, and cycled double the distance required, in honour of her sister. She raised £100 for us.
“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.”