Husband's petition plea to push for more research into condition - The Solihull Observer
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9th Aug, 2022

Husband's petition plea to push for more research into condition

Ross Crawford 22nd Apr, 2022

A LOVING husband is appealing to the people of Solihull to sign a petition he has launched to get government money behind research into the condition that is destroying his wife’s life.

Claire Edwards from Solihull suffers from a rare and debilitating brain condition known as AARS2 Leukodystrophy that will eventually lead to her death.

Claire, 46, has been given just five years to live unless some treatment can be found to treat the disorder.

“Claire was born perfectly healthy, yes had usual goings on catching colds and so on, all part of daily life but nothing major,” said her husband Paul.

“Then in 2019 she fell Ill dramatically overnight.

“She started wandering, getting confused showing slow signs of what I would call dementia.

“Her GP referred her to the community mental health team for an assessment and they gave her a memory test, a set of basic questions anybody could answer.

“Claire failed them all.

“The psychiatrist then informed me that it was not a psychiatrist she needed but a neurologist and so she was admitted to hospital.”

At the time the couple, Claire originally from Balsall Common and Paul from Marston Green, were living in Devon.

It took numerous more tests to discover she had AARS2 Leukodystrophy and the couple are grateful to the charity Alex TLC The Leukodystrophy Charity which has since supported them.

After a battle, and with the help of Meriden MP Saqib Bhatti, Solihull Council found the couple a bungalow back in the borough where Paul is now her full time carer.

“Claire now has a wonderful package of care in place with the care agency Dove Home care they have been amazing and we are eternally grateful to them,” said Paul.

He has now set up an online petition through change.org to lobby the government into releasing funds to secure more research into possible cures and treatments for the condition.

“Our mission statement is: Cure For Claire brings strength and authority to everyone suffering with the AARS2 Leukodystrophy Gene by trying to research and generate funding for future cures and treatments,” said Paul.

To sign his petition visit: https://www.change.org/ClairesCure

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