Rainham grandfather appeals for �50k for treatment for Lily-Mai’s Vein of Galen Malformation
A Rainham man is appealing for �50,000 to help save his granddaughter’s life.
Brian Murray’s granddaughter Lily-Mai, now aged 16 months, was diagnosed with a rare brain condition shortly after birth that meant she needed a series of operations – and now her family say her only hope lies with a specialist doctor in America.
“It would give her a future,” said Mr Murray, 50, of Nelson Road. “If she doesn’t get this treatment she won’t survive.”
Lily-Mai has Vein of Galen Malformation, which affects the blood vessels in her brain – an illness so unusual her parents believe fewer than 20 people worldwide have it. Complications with Lily-Mai’s condition mean she is now blind, and lives with cerebral palsy and epilepsy.
The treatment that could save Lily-Mai’s life involves gamma rays instead of brain surgery - and is only available in the States. �50,000 would pay for her flights, accommodation, treatment and aftercare.
Shaun Steele, Lily-Mai’s father, said: “If she has another operation here and has another bleed she won’t survive – but they have other options [in America] that don’t involve going into her skull.
“It won’t fix her problems – but her life expectancy will go up. If she doesn’t [have treatment] she might last four to five years – or a week.
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“With it done she could hit her 20s and 30s. We’ll always give her a chance.”
Despite all her problems, Lily-Mai is a happy baby. “She can smile and she knows people’s voices,” said Mr Steele, 24. “It would be hard if she were in pain but because she’s happy it makes it that little bit easier.”
Lily-Mai has already shown herself to be a little fighter - she survived a stroke and a series of seizures during her second operation, and confounded medical expectations when doctors told her parents days later there was nothing more they could do.
“The doctors said once they took that tube out of her mouth she might have a few minutes or she might have an hour,” said Mr Steele.
“Every time she’s defied what everyone said.”
Mr Murray is holding a fundraising event at the Cross Keys pub in Dagenham on Saturday June 30. Anyone interested in attending the buffet and disco should call 07876 205 602. Anyone wishing to donate to Lily-Mai’s appeal can do so at http://www.gofundme.com/g0k4g.
