I dread the day when my gorgeous girl, 11, can no longer call me mummy because of childhood dementia
A FEW years ago, Molly Rainbird was like any other child her age.
But now the 11-year-old has lost her speech, eyesight and memory.
At first, mum Adele was told her daughter had a low IQ when she stopped understanding basic instructions.
But Molly has since been diagnosed with Batten disease, a form of childhood dementia.
Children with the disease can live into their early twenties. But Adele’s biggest fear is Molly might get locked in a lonely world, having forgotten those who love her dearly.
Adele says: “The thought of losing my child, who is my absolute world, is devastating.
“And to think she could forget her loved ones and have that feeling of being alone and frightened because of the dementia absolutely kills me.
“She can still say ‘Mummy’, so I hold on to that.
“Life is so cruel and because every child who has the disease is different, nobody can say for sure how much time we have left together.”
Adele shared Molly’s story on Facebook last week to raise awareness of the illness.
‘Support has been incredible’
The post went viral and was picked up around the globe.
Former admin assistant Adele, 39, cares for Molly full-time.
She says: “After I set up a Facebook page called Molly’s Fight Against Battens, I was contacted by a lady in Australia who has a child with the disease, and another mum in New Zealand.
“The support I’ve received has been incredible. I hope we have a couple of years left together at least but finding the balance between staying positive and preparing for the worst is so difficult.”
Molly was six when her teacher told Adele she struggled to follow simple instructions.
Adele, from Stalybridge, Gtr Manchester, says: “Until then, she had always been a lively, quirky little girl.
“Her reading and writing were above average and she was very switched-on. But she suddenly couldn’t grasp things the teachers were asking her to do.
“Once, during a PE lesson, she watched all the other children jump through a hoop but she had no idea what to do.”
Adele suspected Molly had autism or ADHD and the youngster was referred to a paediatrician at Greater Manchester’s Tameside Hospital.
Adele says: “When Molly couldn’t follow the instructions on how to complete the ADHD assessment, I knew there was something else going on. The paediatrician put it down to her having a low IQ but I asked for a second opinion. Then she began having vacant episodes where she’d zone out for seconds at a time.
“When she started having seizures, they investigated.”
A brain scan a few weeks later found Molly’s seizures were caused by a condition called myoclonic absence epilepsy.
Despite being given medication, she would have up to 50 seizures a day. Adele began noticing other signs, too.
She says: “Molly struggled to string a sentence together and her balance was off.
“Her short-term memory deteriorated and she couldn’t take in new information.”
Last March, Molly woke in the night distressed and apparently hallucinating. Adele says: “She was convinced there were spiders in her bed. I tried to calm her, but she was inconsolable, gasping for breath. I rang for an ambulance as I didn’t know what to do.”
Molly spent the next three days in hospital being monitored and then Adele received a call from Molly’s consultant asking to see her.
‘I felt too numb to cry’
She was told Molly had an incurable and extremely rare type of childhood dementia caused by a faulty gene passed on by a parent. Just one or two children in the UK are diagnosed each year.
Adele says: “The consultant explained there was no cure and Molly would eventually become bed-bound.
“Like adult dementia, she would lose everything — speech, the ability to swallow, all her mobility.
“I was in such shock, I felt too numb to cry. My first thought was, ‘What if she forgets who I am?’ It was later that day when it all hit me. I held it together for Molly’s sake but once she was in bed I broke down.
“The only blessing was Molly did not understand what was happening to her.”
Adele now hopes Molly can go to Dallas for the trial of a new treatment developed by Taysha Gene Therapies that could improve her speech.
The cost would be covered by Taysha but spaces are limited and she is still waiting to hear. Eighteen months on from the heartbreaking diagnosis, Molly relies on a wheelchair. She can walk a few steps but is prone to falls. Her speech is limited to a few words and she relies on Adele for basic tasks because her sight is poor. But Adele wants her daughter to experience as much of childhood as possible.
She says: “Molly knows she has Batten disease but I haven’t told her the inevitable outcome. I don’t see what good that would do. She can say a few single words, like ‘thirsty’ and ‘hungry’. Although she has deteriorated in the last six months.”
Molly has just started at secondary school at Cromwell High School, in Dukinfield, Gtr Manchester, which Adele hopes she will benefit from. Adele says: “Molly was in mainstream school up until last September when she switched to a special school for her final year in juniors. She was only there until lockdown and moved up to high school last week. She was so excited to be around other children again which I know will be good for her.
“Nobody can say what will happen in future and Molly will be our guide.
“It’s very difficult to say how much time we have left. If she reaches her twenties we will be incredibly lucky.
“I am making the most of the time we have, making memories. I take her to the park and out for lunch.
“She used to love the cinema but she now gets frightened by the noise.
“She can still see colours and loved the fireworks at Disneyland Paris when we went in January. My niece Gabrielle is six months older than Molly and when they were younger, they loved playing together.
“It is heartbreaking they can’t do that any more but Gabrielle visits often and they sit in Molly’s bedroom.
“Knowing I will miss out on those special moments — like watching Molly get married — is hard to come to terms with. All I can do is watch her fade away.
“I am trying to stay positive and while there is a chance we can get her the right treatment, there’s hope.
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“She still has the most amazing laugh and as long as I can keep her happy and smiling, we will take each day as it comes, together.”
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