A deadly bug is SHRINKING our son’s brain and will eat away at him until there’s nothing left
A MUM has told of her anguish as a deadly bug is shrinking her son’s brain and causing his body to shut down.
Kaason Ogden has a rare condition which affects just one in 50,000 people and his mother Louise said soon her son will lose all of his mobility.
Nine-year-old Kaason has an aggressive form of Degenerative Cerebellar Ataxia, which causes gradual deterioration and will eventually claim his mobility - affecting all his bodily functions.
Mum of six, Louise said: “My little boy’s world is collapsing right in front of my eyes and there’s nothing I can do to stop it.
“His brain will continue to shrink until there is nothing more left.”
Kaason was diagnosed with Cerebral Palsy when he was two years old but has always been active and loves nothing more than riding and fixing his adapted tricycle with his mechanic dad, Alan.
But his condition has gotten so bad, he can no longer ride his beloved trike.
A to raise money to fund a special trike for Kaason that he and his mum can ride together.
Louise, 36, said: “Kaason was diagnosed with Cerebral Palsy when he was two years old.
“His has always been a bit unsteady on his feet and has had problems with his speech.
“I noticed he wasn’t progressing in the quite the same way his older brother was. I knew something was wrong.
"It turned out he had Cerebral Palsy. I was devastated at first but then we accepted it and learned to adapt.
“In October last year, I noticed that his hands and fingers started swelling up. We couldn’t work out what was wrong or if he’d had an accident.”
He’s taught me how to be brave and he honestly never stops smiling. Not all superheros wear capes
Louise Ogden
The family, who live in Blackpool, Lancashire, said the condition progressed within a week or so and Louise said she noticed Kaason’s fists were clenched and that he was getting jumpy.
She added: “I knew something just wasn't right.
"I noticed his wedding finger was hanging down and wasn't moving much. I took him to hospital a number of times and they thought it was due to his cerebral palsy.
"Doctors eventually sent us to Alder Hey Hospital in Liverpool. They found the cerebellum of his brain had shrunk dramatically. It's a very rare condition.
"That was in October and we were due to be seen in March 2020, which was almost six months later.
"Then we got hit with Covid-19 and lockdown which delayed it further, so we've waited 10 months, after being told his brain was shrinking."
What is cerebellar ataxia?
Ataxia is caused by damage to part of the brain known as the cerebellum.
The cerebellum is located at the base of the brain and controls a number of functions.
It looks after speech, eye movements, coordination and the balance you have when you are walking or sitting.
Damage can occur as a result of injury or illness or because it degenerates because of a hereditary gene.
The NHS states: "Sometimes there's no clear reason why the cerebellum and spinal cord become damaged.
"This is the case for people with idiopathic late-onset cerebellar ataxia (ILOA)."
Symptoms of cerebellar ataxia usually first develop in adults and include problems with balance and coordination, often causing wobbliness, clumsiness and frequent falls.
Kaason is thought to have hereditary ataxia where symptoms develop slowly over many years and are caused by faulty genes that a person inherits.
Louise added: “His fingers swell up; he doesn't have much balance or coordination and his left side of his body is a lot weaker.
"It's usually something older people get diagnosed with, so it came as a shock. We thought it was cerebral palsy, but they now think he doesn't have that anymore.
"We're just waiting for more tests to establish what his future holds.
“He absolutely loves being on that trike; it's how he gets about because he can no longer walk even with his frame.”
She added that soon Kaason will lose all his mobility and won’t be able to ride the trike any more.
Louise said: "We're looking for a trike for me to ride with a proper seat at the front but they're around £4,000. I'm off work at the moment due to Covid-19 and I have six kids, so it isn't affordable right now.
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"It would be the best thing ever because he loves his trike and it's something we can do together.
"Lockdown was very tough with this and five other children who all needed me. I had to hold it together. His school has been a great support for us. They've really helped.
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"He is the strongest boy I know; he’s been through more than most adults and still wakes up with a smile that lightens every room in my house, he is my soldier.
"He’s taught me how to be brave and he honestly never stops smiling. Not all superheros wear capes."