As a toddler, Mia Murchison was a healthy little girl who loved laughing, dancing, singing and running. Between 2 and 3, parenting her was a little bit more challenging but with a brand new baby in the mix, her parents, Peta and Hamish, didn’t think much of it and they were delighted with their spirited, bossy, active child.
Her speech was undeniably behind the curve, but her paediatrician reassured Peta and Hamish it wasn’t anything to worry about. Her comprehension was fine, she was active; it was just taking her a little longer to focus on sentence structure and conversation.
Then at 3-years-old, Mia had her first seizure. She was diagnosed with epilepsy, but over nine months her condition deteriorated.
“Mia started to fall down steps and lost the confidence to run, all while the seizures continued,” Peta explained. “The specialist said, ‘She’s too high-functioning to have one of these more serious conditions, but let’s just run this gene-sequencing and rule them out.’”
Much to everyone’s surprise, Mia was diagnosed with Batten disease – a neurodegenerative disease which has left the now 7-and-a-half year old unable to walk, support her head, talk, see or eat.
Batten disease is fatal and there’s no known cure, and children with Mia’s type of Batten have a life expectancy of 8 – 12 years old.
“She’s still beautiful and gives gorgeous smiles, and we have beautiful cuddles, and she loves music, loves baths and still goes horse riding with Riding for the Disabled,” proud mum Peta explains.
“We took her skiing last year and she sat in a sit ski, a wheelchair on the slopes, and we just try and bring as much joy to her life as we can.”
Mia’s certainly packed a lot in to her short time on this planet. Kate and Wills paid her a visit at children’s hospice Bear Cottage, and Guy Sebastian serenaded her and her friends down at her local primary school.
This need to brighten Mia’s life at every step of the way saw Peta and Hamish found Bounce4Batten.
When Mia was first diagnosed, she still loved jumping around, so the Murchisons popped a bouncy castle in the backyard to celebrate their first national Batten awareness day and asked their friends to post a pic on social media with #Bounce4Batten.
“It was incredible, it felt like everyone rallied around us and jumped on board,” Peta said.
“It was a positive way to let people know about our situation as well as other families facing a Batten disease diagnosis – and also for a bit of joy amongst all the heartbreak.”
To celebrate this year’s national awareness day, the Murchisons are going bigger than ever – they’re going to break a Guinness World Record.
They need 50,000 photos of people any shape, size or age jumping with both feet off the ground uploaded onto bounce4batten.com.au so they can be counted by the official world record keepers.
The key is the number of actual photos, not people jumping in the photos, says GWR official, Solvej Malouf.
Batten is an incredibly rare disease, and awareness drives like Bounce4Batten help fund research for those in the early stages of the disease, like Tayla Riddle.
Tayla is an absolutely gorgeous four-year-old who I have no doubt has everyone in the palm of her hand as soon as they meet her.
Tayla was diagnosed with the same type of Batten disease as Mia in December last year.
Tayla Riddle
“It’s still pretty raw for us, it’s only been a few months,” her dad Jay said.
“But she’s doing really, really well so it hasn’t really hit home yet.”
He’s right – you can’t tell Tayla apart from any of the other little kids running around at the Only About Children centre.
“There’s a trial in place internationally at the moment which can delay or prolong their digressions.
“That involves putting a reservoir into the brain and injecting the enzyme replacement there fortnightly in an attempt to slow it down,” Jay explains.
“By no means is it a cure. But, on the back of it may be potential gene therapies and that might lead to a cure.”
“We’re trying to buy some time,” his wife Bobbie adds.
Tayla was diagnosed after just five months and because she’s still doing so well, she’s one of the best candidates worldwide to be a part of the trial.
“We just continue doing OT, physical therapy, speech therapy, swimming, lots of activities to get her legs functioning daily so should we get this opportunity, she’s still as good as she can possibly be,” Jay explained.
The diagnosis has, understandably, rocked the family to its core.
“When you’re told that diagnosis, it changes your life forever,” Bobbie admitted.
“I’ve taken off work now so I can be with her full time. I just want to treasure every moment I can have with my child, so that’s what we’re doing.”
“It’s just the most unfortunate, devastating disease that any child could suffer,” Jay concluded.
Please help this charity by submitting your jumping photos to bounce4batten.com.au and make a donation at battens.org.au
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