A Nottingham mum has shared her heartbreak after her nine-month-old baby was diagnosed with a rare disease that means she will not live past childhood. Reanna Cotterill, of Bilborough, was told on February 22 that her daughter Milanna-May Eshelby had Mitochondrial Disease, a life-limiting condition.
"When I got the news I kind of just shut off, when I was told she was not going to live a long life," the 25-year-old told Nottinghamshire Live. She said her daughter had been "perfectly" happy and healthy up until January, when she began having prolonged seizures.
After taking her to Queen's Medical Centre, Milanna was given treatment for epilepsy. However, she continued to have fits and her parents, Ms Cotterill and Malaky Eshelby, were given the worst news a parent could receive.
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"She's not going to have a long life, they've told her that it varies between each and every person," said Ms Cotterill. "She could pass away in the next year, in the next two years. They said because she got it in childhood she won't outlive childhood and she will pass away.
"They've said make the next three years the best she can live. They can't tell when but she's not going to live a long life now she's got this disease. Because the symptoms started so angrily, the next step will be loss of hearing and eye sight.
"It's just about making the last years of Milanna's life the best we possibly can." Since receiving the devastating news, the family have started a fundraiser to help pay for treatment in America.
The GoFundMe page has raised around £15,000 at the time of writing. Ms Cotterill said the new treatment, which is being trialled in Boston, will not cure her daughter but would "prolong her life and make it a pain-free life".
She expects the treatment to cost £800,000 but says £10,000 will help cover the flight, accommodation and initial appointment. "I couldn't believe it. A lot of strangers have donated and a lot of people who go to my salon have donated and shared," she said.
Malanie Roberts, mum to Ms Cotterill and grandma to Milanna, said she was "devastated" by the diagnosis. "It's come after going to the QMC for what was thought to be epilepsy, it's absolutely heart-breaking," said the 44-year-old care team leader.
"We are all still getting our heads round it. The response [to the fundraiser] has been absolutely amazing." To donate to or share the fundraiser, click here.
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