A Nottingham mother has shared her heartbreak after her nine-month-old baby was diagnosed with a rare disease that means she won’t live past childhood. Reanna Cotterill, from Bilborough, was told on February 22 that her daughter Milanna-May Eshelby had mitochondrial disease, a life-limiting condition for her.
“When I got the news I just tuned out, being told I wasn’t going to live a long life,” the 25-year-old told Nottinghamshire Live. She said her daughter had been “perfectly” happy and healthy until January, when she began having prolonged seizures.
After being taken to the Queen’s Medical Centre, Milanna received treatment for epilepsy. However, she continued to have seizures and her parents, Mrs. Cotterill and Malaky Eshelby, received the worst news a parent could receive.
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“She’s not going to have a long life, she’s been told it varies from person to person,” said Ms Cotterill. “She could pass away next year, in the next two years. They said that because she got it in childhood, she won’t survive childhood and she will die.”
“They said make the next three years the best you can live. They can’t say when, but you’re not going to live a long life now that you have this disease. Because the symptoms started so badly, the next step will be the loss”. of hearing and sight.
“This is about making the last years of Milanna’s life the best we can be.” Since receiving the devastating news, the family has started a fundraiser to help pay for treatment in the United States.
The GoFundMe page has raised around £15,000 at the time of writing. Ms Cotterill said the new treatment, which is being tested in Boston, will not cure her daughter, but “it will prolong her life and make her life pain-free.”
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. Lots of strangers have donated and lots of people who come to my salon have donated and shared,” she said.
Malanie Roberts, mother of Ms Cotterill and grandmother of Milanna, said she was “devastated” by the diagnosis. “It came after going to the QMC for what was thought to be epilepsy, it’s absolutely heartbreaking,” said the 44-year-old care team leader.
“We’re all still thinking about it. The response (to the fundraiser) has been absolutely amazing.” To donate or share the fundraiser, click here.
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