LOCAL STORY: Community rallies to help kid with a 'one in a million' disease

24 October 2018

Imagine your 5-year-old child catches a cold that triggers a remission that results in a doctor telling you your child has a rare terminal disease and there is no cure.

This is what happened to Sunshine Coast mum Sophie and her beautiful boy Miller and now they asking for help from the community.

A seemingly average head cold resulted in a disease taking over young Miller at only 5 years old.

He lost the ability to speak, move, even feed himself within 2 weeks of that cold.

Sophie was then given a diagnosis no parent should ever have to hear, that her beautiful boy has a terminal disease called PKHAN - Pantothenate kinase-associated neurodegeneration - and most children who have it, don’t live long or beyond 10 year's old.

For young Miller’s mum this was now her life and her son is now battling to make it through this Christmas and to his next birthday as the disease take a horrific hold over his young life.

People with PKAN lack a chemical necessary to metabolize a vitamin in the brain. Without normal levels of this metabolite, part of the brain degenerates, causing severe problems with walking, coordination, vision, speech and swallowing.

The illness is particularly cruel in childhood, when uncontrollable twisting movements can be extreme, causing pain and even bone fractures. Awareness is not affected, making the suffering imposed by the disease especially poignant.

PKAN affects one in one million people.

Because of Millers condition and the fact that is has deteriorated quite rapidly Miller has been mostly housebound for a long time except for medical appointments.

Normal car travel is just no longer possible for the young boy, isolating him and also his mother and baby sister in an even crueler twist of fate.

Leaving the house for any reason has become virtually impossible for Miller, who loves trucks and Paw Patrol.

“As we don’t have a suitable vehicle, we just can’t get out of the house anymore. We want to take him to see the water, and to stroll along the beautiful beaches. He would so live to swing at the park and see his friends and family, but he’s stuck laying on his mattress on the floor at home," Miller’s dedicated mother Sophie Cashen said. “Our memories are all we will have and we are desperate to give Miller the memories he deserves.”

“A larger safer vehicle would be life changing. Miller would be able to live his life with dignity and doing the things every little boy deserves to be doing.”

Local businesswoman and mum Jess Ryder of Valkyrie Fitness wanted to help so she is helping the family raise the much needed funds to get the van they need.

“I just had to help,” said Jess passionately, “Miller is a superhero so that was always going to be the theme of the fundraiser,” said Jess, who is a fitness expert in the Nambour and Sunshine Coast community and a mum with a young son herself.

Jess is holding a superhero themed launch and fundraiser event with all proceeds going to Miller and his family to help finally get that van, and get him out of the house.

“PKHAN is also very heavily tied to their emotions,” said Sophie, “The more stressed they are, the worse the symptoms and pain can be so Miller being able to see the ocean and his friends and have a really happy day at the park on a regular basis purely through a better vehicle could literally extend his life.” “We would love to make this Christmas with him one we can remember and treasure.”

People can donate from anywhere through his Go Fund Me account. If the public can raise enough money for this little boy to have the appropriate car he needs it would be the most incredible act of community.

And this weekend Jess Ryder is holding a fundraiser for the family with a Superhero Morning at their premises in Yandina! 8am to 10.30am!
With boot camp, best dressed costume prizes. raffles, stalls and more. Find out more at the event facebook page

 

Written by

Kids on the Coast/Kids in the City
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