My little boy started losing his teeth – now he is battling an ultra rare illness
A LITTLE boy started to lose his teeth, before doctors told his shocked mum he had an ultra rare illness.
Myles Tucker, 3, is one of only 120 children in the world battling this condition.
He is now living with 4H leukodystrophy, after his family noticed he had missing teeth.
His genetic condition is only the third diagnosed in Wales, where the family is from.
Georgia Hughes, his mum, said she took her boy to the doctor after noticing the change in his mouth.
She told North Wales Live: "I brought this up with his paediatrician and she referred us to Alder Hey and it was there he was diagnosed with hypodontia – which is collectively part of the leukodystrophy.
"Myles is such a sweet and beautiful boy. He absolutely loves pre-school and this condition just doesn't stop him.
"He's full of determination and always has a smile on his face.
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"The general life expectancy is ten years for a child with leukodystrophy. He'll need more professional care and support coming into his life as he grows up.
"As the disease progresses we'll need to keep an eye out for things like swallowing difficulties. These are things that are yet to happen but we've been told they can occur.
"I hope that by making more people aware of this condition we can help others understand it and know what to look out for."
The condition is hard to spot but there are some signs that can indicate if children have it.
Abnormal development of teeth, or a lack of them, is one.
Another symptoms is delayed puberty, but this would be picked up much later in childhood.
It can be spotted through MRI scans, which pick up if hypomyelination (an undeveloped "brain cover") is present.
Myles' condition was diagnosed after he had two scans to confirm he had hypomyelination.
The illness is caused by an abnormal build-up of substances called sulphatides in the nerve cells, particularly in the brain's white matter.
It takes the place of myelin, which is essential for normal transmission of messages between nerves.
With MLD, this substance can't be removed from the body in the normal process, so messages to other parts are blocked and don't work as well.
Georgia has set up a fundraising page hoping to help fund the finding of a cure.
She wrote: "4H syndrome shortens your life span considerably and has devastating affects.
"As well as wanting to raise as much awareness as I can I inevitably hope for a cure, for all our children."
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