A HEARTBROKEN guardian of a toddler with just one year left to live is pleading for help as he suffers from a condition so rare there are reported to be only around 25 cases of it worldwide.
Maxine Rothchester has devoted her life to caring for three-year-old Isaac Blake who suffers from Allan-Herndon-Dudley syndrome.
The condition, exclusive to males, is a rare disorder of brain development that causes moderate to severe intellectual disability and problems with movement.
The 59-year-old Andover woman says Isaac suffers around 50 seizures a day, adding: “He’s almost four and weighs a tiny nine kilograms as he cannot tolerate milk which is currently fed direct into his bowel.
“He’s registered blind, doesn’t move independently and cognitively is around six weeks of age.”
Maxine first took Isaac in as a foster child when he was 10-months-old as he was considered not adoptable due to the severity of his maladies.
She soon decided to become his legal guardian and is still in contact with his biological mother, who Maxine says has been very supportive of everything she does.
But earlier this month one of Isaac’s neurologists gave Maxine the devastating news that he has one year left to live.
She has been referred to the Dove Clinic in Winchester, who treats chronic illnesses.
A half-hour initial consultation with the Winchester clinic costs £280 and Maxine is looking to raise £10,000 to help Isaac have a better quality of life.
Her hope is for Isaac to be treated with cannabis oil, which she has heard has helped treat epilepsy sufferers.
Currently the medication is not licensed for prescription in the UK due to its narcotic version, and companies are still seeking the potential for medical marijuana in the UK market.
However, Maxine says Isaac does not have time to wait.
She says she is not looking to cure Isaac as the condition is not curable but hopes his life could be made a little easier to bear.
Maxine said: “We’re just desperate to give him treatment which can help stop his seizures.
“It’s not going to cure him and it’s not going to stop him from dying but it might give him a better quality of life.
“It’s better than 50 seizures a day and having a year left to live.
“We need desperately to raise the funds for treatment and every penny counts.
“It’s worth every penny.”
She added: “I love him so much, this helpless child who has stolen my heart, I nurse him at home mainly on my own because that’s what he thrives on - a home environment.
“I am not ready to let my little man die.
“I think it’s the only thing left to try and if Isaac died and I hadn’t tried everything, I’d never forgive myself.”
To donate, visit gofundme.com/hope-for-isaac.
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