Due to the tot’s limited lifespan, Kaycee’s family have taken to celebrating her half birthdays – and her most recent one was very special indeed.
A bride has spoke movingly of her heartbreaking decision to combine her bridesmaid daughter’s sixth-and-a-halfth birthday with her own orange-and-white-themed wedding – the colours of Batten disease awareness, a form of juvenile dementia which has stolen her little girl’s future.
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Due to the tot’s limited lifespan, Kaycee’s family have taken to celebrating her half birthdays – and her most recent one was very special indeed.
When Kaycee began falling to the floor for no apparent reason, her mum hoped it was just clumsiness, but when this was accompanied by delayed speech, thinking she might have the developmental disability, autism, she took her back to the doctor’s.
She added: “During that time, Kaycee was only getting worse. She was losing teeth, as she kept falling over and could barely walk properly.”
“None of us had ever heard of it. There had never even been a known case in our area, but we were told it was terminal there and then,” she added.
She added: “I was greeted by screams of, ‘There can’t be a god – how could there be?’
But, costing around £500,000 annually per patient, she discovered it was very rarely available in the UK.
Since then, Kaycee and Claire have visited the hospital every fortnight for two years, for the treatment – funded by the National Institute for Health and Care Excellence (NICE) – travelling for over four hours each way.
“She’s usually awake for the whole four hours, so I have to stay by her side and watch movies with her, to make sure she doesn’t fidget and move anything she shouldn’t,” she added.
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.
Although they face many obstacles, the family have still enjoyed fun times – such as a trip to Disneyland Paris for two nights, provided by the charity, Make A Wish, in August 2018.
Claire Bradshaw, 45, from St Helen’s – now her daughter Kaycee’s full-time carer – was devastated two years ago when she was diagnosed with the incurable genetic condition – which affects everything from her mobility to her mental health and will mean she is unlikely to live beyond the age of 12.
And when Claire – who celebrates Kaycee’s half birthdays because of her limited lifespan – married warehouse worker Greg Riley, 47, on October 27, she asked people to wear orange, to support her fervent campaigning to raise awareness of Batten disease.
She said: “I told my guests they couldn’t come unless they wore orange. But, seeing them all there in that sea of orange, made my heart swell.
“I cried when I walked down the aisle, but 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.”
A mum-of-six, Claire – who is not in touch with Kaycee’s dad – told how her nightmare began in September 2015 when, after experiencing jerky movements or tics, her little girl was diagnosed with epilepsy, which affects the brain and causes seizures.
Kaycee on her mum's big day and half birthday (PA Real Life/Barry Thomas)
When Kaycee began falling to the floor for no apparent reason, her mum hoped it was just clumsiness, but when this was accompanied by delayed speech, thinking she might have the developmental disability, autism, she took her back to the doctor’s.
She explained: “We visited the doctor and asked why Kaycee wasn’t developing like a normal child.
“After that, we went through 16 months of pure hell – with countless blood tests and MRI scans to figure out what was wrong.”
Greg and Claire during their orange and white ceremony (PA Real Life/Barry Thomas)
She added: “During that time, Kaycee was only getting worse. She was losing teeth, as she kept falling over and could barely walk properly.”
Then came the dreaded call, on August 31, 2016, when the family were told Kaycee had CLN2 Batten disease – meaning her life expectancy was between just eight and 12.
Claire recalled: “The nurse who gave the diagnosis had to Google it right in front of us, because even she didn’t know what it was.”
Kaycee and her mum and siblings during a trip to Disneyland Paris on behalf of Make A Wish (PA Real Life/Collects)
“None of us had ever heard of it. There had never even been a known case in our area, but we were told it was terminal there and then,” she added.
Sent home with an A4 sheet of information about Batten, still in shock, Claire and Greg had the troubling task of telling her five siblings – Bryan, 27, Natasha, 25, Callum, 22, Tyler, 16, Tazim, 10 – the terrible diagnosis.
Claire recalled: “it was a complete nightmare, which will always be permanently etched on my brain.”
Kaycee during her enzyme treatment (PA Real Life/Collects)
She added: “I was greeted by screams of, ‘There can’t be a god – how could there be?’
“it was truly heartbreaking.”
Determined not to give up, the devoted mum then spent day and night Googling the condition, until she found cerliponase alfa treatment, a form of enzyme replacement therapy administered directly into the brain which, while not a cure, can slow down the progression of the condition.
Kaycee during a visit to the hospital (PA Real Life/Collects)
But, costing around £500,000 annually per patient, she discovered it was very rarely available in the UK.
She said: “I got a phone call from the BDFA – batten disease family associations – charity telling us we could have the treatment free – if we got in quick enough.
“There were only five funded places – as there still are – in the UK and three were taken, so we went straight to London’s Great Ormond Street Hospital to get it.”
Kaycee with a princess during a trip to Disneyland Paris on behalf of Make A Wish (PA Real Life/Collects)
Since then, Kaycee and Claire have visited the hospital every fortnight for two years, for the treatment – funded by the National Institute for Health and Care Excellence (NICE) – travelling for over four hours each way.
Claire continued: “The treatment involves a needle infusion straight into the brain, which takes four hours to drive through a syringe.
“It can’t cure Kaycee, but it does slow down the effects.”
Greg and Claire sharing a special moment (PA Real Life/Collects)
“She’s usually awake for the whole four hours, so I have to stay by her side and watch movies with her, to make sure she doesn’t fidget and move anything she shouldn’t,” she added.
One of the most agonising aspects of batten disease, according to Claire is that, while it can be similar to caring for an elderly person with the same condition, all her daughter wants to do is run around and play with other children.
Claire explained: “She has frequent short-term memory loss and can barely recall what she does during the day.”
She continued: “Her vocabulary is extremely limited. She can say, ‘mum’ and various grunts and groans, which only her family can interpret. Often she wears nappies and drools – at her worst times, she’s a mess.”
Taking Kaycee to play areas is a great challenge for Claire, who finds watching her stumble and barely stand up to play with other children heartbreaking, while her daughter ends up screaming in frustration at her limitations.
Conversations with Kaycee can also be extremely 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.
The newly weds orange cakes (PA Real Life/Barry Thomas)
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.
She said: “I’m constantly aware that more bad turns could be around the corner.
“Eventually, Kaycee will need tubes to assist in feeding her, but right now she still laughs and giggles like any other child.”
Claire on her hen night (PA Real Life/Collects)
Although they face many obstacles, the family have still enjoyed fun times – such as a trip to Disneyland Paris for two nights, provided by the charity, Make A Wish, in August 2018.
One of Claire’s proudest moments was getting the news that Kaycee is included in the final three for the Child of Courage awards on November 16th.
But Claire said the Bradshaws’ biggest celebrations are on Kaycee’s birthdays, adding: “Half birthdays for terminally ill children are celebrated for obvious reasons. We never know how much time is left, so every minute is precious.”
Claire and Greg looking happy on their big day (PA Real Life/Collects)
She added: ”We got married on her last half birthday this year and 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 at her special needs school 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.”
“Raising awareness for Batten disease was a big part of my wedding day, too. Sometimes it swallows my life, but until we beat it, I won’t leave it alone,” Claire continued.
“Forget the honeymoon, we can just have a caravan holiday at some point.”
Now the wedding is over, the couple are back to normal life in their three bedroom council house, where Claire has to constantly carry Kaycee up and the down the stairs and two family members have to watch her in the bath for safety.
But, despite everything, Claire refuses to accept that losing the daughter she so loves is inevitable, saying: “Every time I go to bed at night she sleeps with me, that’s my way of keeping her safe.
“I want her to see me every morning and night. 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.”