By PA Real Life
A bride and mum-of-six made sure her wedding coincided with her little girl turning six-and-a-half for the most heart-wrenching reason.
Claire Bradshaw, 45, from St Helen’s, Merseyside, held an orange-and-white themed wedding to raise awareness of Batten disease, a form of juvenile dementia which her young daughter Kaycee lives with.
The full-time carer said the family’s biggest celebrations tend to coincide with Kaycee’s birthdays. “Half birthdays for terminally ill children are celebrated for obvious reasons,” Claire explained. “We never know how much time is left, so every minute is precious.”
On the day she married warehouse worker Greg Riley, 47, she cried while walking down the aisle. “I wasn’t crying because I was marrying the love of my life, I was crying because I was thinking about all those boys and girls who have died from this condition,” she said.
Despite the big day being tinged with sadness, Claire said: “I was very happy for her to upstage me, as the wedding was designed to be a celebration for her as well as me and Greg.
“Our family and friends partied well into the night after the ceremony, and even Kaycee’s favourite teacher attended.
“I show her pictures and try to remind her of the big day. I’m not sure she even remembers it, but I want to at least try to keep the memory alive for as long as possible.”
She added: “I told my guests they couldn’t come unless they wore orange. Seeing them all there in that sea of orange, made my heart swell.”
Kaycee was diagnosed with the incurable genetic condition – which affects everything from her mobility to her mental health – two years ago. It’s unlikely she’ll live beyond the age of 12 and, because of this, her family celebrate all of her half birthdays to make the most of the time they have together.
The six-year-old has been receiving cerliponase alfa treatment, a form of enzyme replacement therapy administered directly into the brain, since her diagnosis. While it’s not a cure, it can slow down the progression of the condition.
One of the most agonising aspects of batten disease, according to Claire, is that all her daughter wants to do is run around and play – but she can’t always do that.
“She has frequent short-term memory loss and can barely recall what she does during the day,” Claire said. “Her vocabulary is extremely limited. She can say ‘mum’ and various grunts and groans, which only her family can interpret.”
Conversations can be painful, with Claire frequently having to leave the room to cry in private as she cannot understand what her little girl is trying to tell her, or why she is distressed.
Despite the difficulties, however, she still believes that Kaycee has a great quality of life, but would never want to prolong her suffering or pain if she started to deteriorate rapidly.
“I’m constantly aware that more bad turns could be around the corner,” she said. “Eventually, Kaycee will need tubes to assist in feeding her, but right now she still laughs and giggles like any other child.”
Claire added that Kaycee sleeps in her bed each night, so they can spend every precious moment together. “I want her to see me every morning and night,” she said. “I stroke her eyelashes and fingers and make sure she falls asleep. When I say goodnight, I think, ‘Is this the last time I’m going to say this?’.
“People’s wishes and desires in life change all the time. Mine are always the same – to keep Kaycee with me. I want her to be here when there’s a cure, that’s the bottom line.”