“We knew something wasn’t right during the pregnancy,” says Mum Kayleigh.
“Evelyn’s growth was restricted, and she was born two months early. She was so tiny, weighing less than 3lb and it took another four months to get a diagnosis. Evelyn had MIRAGE syndrome. It’s a very rare and complex condition that is only known to affect around 50 people worldwide. As soon as we found out, we researched everything, but it’s a new discovery and the doctors are still learning themselves. We found a Facebook group of families with MIRAGE children, and that helped with information, but we soon realised that the prognosis for most is bleak. It was heartbreaking to find out that Evelyn might not even reach two years old. But we were positive and hoped hers was a less severe case.”
The word ‘hospice’ sounds scary
Kayleigh and Sam had heard about Keech from a nurse at the hospital. “Evelyn was doing well at the time, and we couldn’t understand why we needed a hospice,” says Sam, Evelyn’s dad. “We thought hospices were only for people whose death was imminent, and that wasn’t us.”
After learning that Keech supported families at all stages of life-limiting conditions, the couple self-referred and began attending Keech for respite care.
“Keech was a breath of fresh air,” says Kayleigh. “I just wish we’d have engaged with them sooner. It could be scary for family and friends to look after Evelyn. It was a big responsibility and she’d often faint or go blue, but the team at Keech took it all in their stride, including handling Evelyn’s feeding pump and oxygen tank.
“We got to know them all by first name, and they got to know Evelyn. They knew she hated cows and fire engines, for example. They spent time with Evelyn doing what she loved, including watching Ms Rachel on YouTube.”
The most important of decisions
In June 2024, Evelyn developed intestinal failure. She was on pain relief, but her pain became so severe that in early November, during a hospital visit, her heart temporarily stopped. “We knew then that the end was near,” says Kayleigh. “We were utterly devastated but determined to make the end of our daughter’s life as peaceful as possible.”
“That’s why we made the decision to spend Evelyn’s last week at Keech,” says Sam. “It wasn’t always easy to understand Evelyn’s wants and needs because of her age and condition, but she made it very clear she loved going to Keech. Every time we walked through the door, she’d fling her arms into the air with joy and let out a happy squeal. Evelyn’s love for Keech was the most important factor in our decision, as well as the team there feeling like close friends and family and the knowledge that at Keech, Evelyn’s pain would be well managed.”
The family spent a week living at Keech, so they could spend this precious time with their daughter. “There wasn’t a day in that week that additional family members didn’t also stay with us,” says Sam. “That included Evelyn’s older sister and younger brother, and family members who hadn’t been able to spend quality time with her due to how poorly she’d been. Those hellos and goodbyes made the time so special.”
A week of memories
During Evelyn’s final week, the family made precious memories, including making hand and feet casts. And, one morning, something magical happened…
“We woke up one morning to a carpet of snow outside,” says Kayleigh. “The nurses got excited when we told them how Evelyn’s favourite time of year was Christmas, and decided they’d make Christmas happen early, just for her.” Arrangements were made quickly, and the very next day, 25 friends and family came to Keech to celebrate with Evelyn, including Santa himself.
“The team pulled decorations out of storage, we had Christmas music and even a full Christmas dinner which was delicious,” says Kayleigh. Evelyn wore a special dress and looked beautiful. She slept for most of the party, but in true Evelyn fashion, she was wide awake and happily interacting with some of our friends who’d hung back once the party finished.”
Knowing how much Evelyn loved watching Ms Rachel, the Keech team contacted her to ask if she’d make a personal video message for Evelyn. “That’s something we never expected,” says Kayleigh. “It wouldn’t have crossed our minds to do that, imagining how many requests Ms Rachel must get every day, and we’re so grateful they thought to try.
“It wasn’t just the big gestures that mattered though. The team also encouraged us to do small acts, like taking a walk around the grounds. It was sometimes hard to feel motivated when you know what’s coming, but we’re so glad for their advice, because it was things like those short walks that we still remember today — how we strolled through the snow as a family, pushing Evelyn in her buggy.”
Evelyn’s siblings Koko and Freddie also got involved in making memories, by creating memory boxes. Koko put half a heart keyring in Evelyn’s hand, and kept the other half herself as a lasting memory of her little sister.
A peaceful goodbye
Evelyn died pain-free and peacefully on 23 November, cuddled up with her mummy and daddy, while they sang her favourite bedtime song to her.
“There’s such a taboo around dying,” says Sam. “Yes, it’s a terrible thing to go through, but hospices can give you special family moments. Keech made something that could have been traumatic into something beautiful, and we hadn’t expected that.”
To everyone’s surprise, a personal video with a message to Evelyn arrived the next day from Ms Rachel. “We were so touched that she’d taken the time to do it,” says Kayleigh. “Although Evelyn never got to see it, we played it at her funeral, so it still played a big part in our goodbyes.”
Kayleigh talks about Evelyn’s journey with MIRAGE Syndrome on TikTok at ‘.kay.doherty’, which has led to two more children worldwide receiving a diagnosis.
How you can help
The majority of Keech Hospice’s work is funded by generous donations from our community. We simply couldn’t continue offering our vital services without your help. Please make a donation or find out other ways you can get involved, such as through volunteering or taking part in our events.