A MUM has shared her heartbreak after her baby girl was diagnosed with a rare disease that means she will not live past childhood.
Reanna Cotterill said her nine-month-old daughter Milanna-May Eshelby was “perfectly” happy and healthy until she began having prolonged seizures.
Nine-month-old Milanna-May Eshelby, pictured, started having seizures on January 7
NottinghamshireLive/BPMReanna Cotterill, pictured with her daughter Milanna-May Eshelby, said Milanna was a happy healthy baby until she began having seizures[/caption]
Reanna, from Bilborough, Nottingham – was at the Queen’s Medical Centre with her daughter when she had her first seizure on January 7.
The 25-year-old mum had been told by doctors that Milanna had an ear infection and was waiting to collect some antibiotics when she noticed her daughter wasn’t responding to her.
Reanna said: “She had a starry bib on and I thought she was just looking at the stars.
“I said ‘Milanna’ and she wouldn’t look at me.”
Reanna flagged a passing nurse, who whipped the baby out of her pram and said ‘she’s having a seizure’.
Milanna was rushed to intensive care. Her seizure lasted for about two hours and 40 minutes, according to Reanna.
She was diagnosed with epilepsy and received treatment.
But she continued having frequent seizures, to her parents and doctors’ worry.
On February 22, Milanna was diagnosed mitochondrial disease with a NARS 2 Mutation.
It’s a condition caused by faulty mitochondria which is incurable.
‘WORST NIGHTMARE’
Her parents Reanna and Malaky were heartbroken at the news she would not live past childhood.
“When I got the news I kind of just shut off,” Reanna recalled.
“As a parent it is your worst nightmare. She’s our first and we tried so long for a baby.
“It just feels like we’re in a dream at the minute and we’re just waiting to wake up,” said Reanna.
The mum was told that mitochondrial disease varies from person to person.
“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.
“Because the symptoms started so angrily, the next step will be loss of hearing and eyesight.”
Doctors told Reanna to ‘make the next three years the best she can live’.
“It’s just about making the last years of Milanna’s life the best we possibly can,” the mum said.
What is mitochondrial disease?
It affects your body’s mitochondria, which are responsible for producing the energy our cells need to function.
When a person has mitochondrial disease, the mitochondria in their cells are not producing enough energy or they do not work at all
The severity of your symptoms depends on how many cells are affected and where they are in the body
Parts of the body commonly affected are those with the highest energy demands, such as the brain, muscle, liver, heart and kidney
Unfortunately, there is no cure for mitochondrial disease at present
Treatment is usually supportive, relieving the symptoms that can develop, according to the NHS
Since receiving the devastating news, the family have started a fundraiser to help pay for treatment in America.
Reanna 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.
The GoFundMe page has raised over £20,000 for Milanna at the time of writing.
“I couldn’t believe it,” Rheanna said.
“A lot of strangers have donated and a lot of people who go to my salon have donated and shared.”
Milanna’s grandma Malanie Roberts said she was “devastated” by the diagnosis, calling it “absolutely heart-breaking”.
“We are all still getting our heads round it,” she said.
But she described the response to the fundraiser as “absolutely amazing”.
NottinghamshireLive/BPMMilanna, pictured with Mum Reanna, will lose her hearing and eyesight next[/caption]
NottinghamshireLive/BPMReanna said: “It’s just about making the last years of Milanna’s life the best we possibly can”[/caption] Read More