The heartbreaking rare condition that tears lives of young families apart

A YOUNG Nottingham child is battling a rare disease against the odds that claimed the life of another two-year-old in the city.

- By OSCAR FISHER

Milanna-May Eshelby was born in May 2022 and was diagnosed with rare but untreatable mitochondrial disease.

She died in February and her parents, Reanna Cotterill and Malaky Eshelby, had been in contact with another Nottingham couple, Elaine and Leigh Fox, who are going through the same trauma with their three-year-old daughter.

Katie Fox's symptoms are getting worse to the point that she can no longer eat normally.

Reanna said: "Following multiple miscarriages, Milanna couldn't have been a more wanted or cherished daughter when she arrived in the world on May 14, 2022 ... our precious first child. Milanna was a normal, healthy, happy baby.

"Just after her first Christmas, she was poorly, but Calpol and reassurances from others temporarily took away my niggling instinct that something wasn't right. Then, in February 2023, she began having horrendous seizures - up to two and a half hours long and literally hundreds of them.

"She was eventually put into intensive care so her little body could rest. The diagnosis was epilepsy. Milanna was prescribed medication to control the seizures but her subsequent regression and new symptoms, such as tremors, once again rang alarm bells and we pressed for more help."

A referral to a genetics consultant brought heartbreaking results - a mitochondrial disorder caused by a mutation of the NARS2 gene. This meant Milanna would lose her sight and hearing and the illness was severely life-limiting.

Reanna added: "We were told we'd lose Milanna before her second birthday - there were no treatments, no cure. We couldn't begin to accept this outcome for Milanna. We went to the specialist mitochondrial disease clinic in Newcastle, desperately hoping for different news.