Family devastated as Wigan girl, 3, diagnosed with rare brain disease

A Wigan couple are fighting to raise awareness of a rare brain disease after being given the devastating news that their three-year-old daughter has just five years left to live.

Monday, 22nd March 2021, 11:01 am
Updated Monday, 22nd March 2021, 11:04 am
Niomi Roberts and Adam Ratchford with their daughter Darcy (Picture: Ian Lively)

Niomi Horrocks and Adam Ratchford, from Scholes, were given the bombshell news that little Darcy has Metachromatic Leukodystrophy (MLD).

The progressive disease destroys the white matter around her brain and causes problems with speech, movement, difficult swallowing and blindness.

Doctors have told the couple that their daughter has around five years left of her life.

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In another setback, the pair have found out that Darcy is not eligible for any treatment to try to prevent the progression of the disease and a clinical trial for treatment in Birmingham, which was their only hope for Darcy, declined to allow her onto it because unfortunately they stopped recruiting candidates for it in January.

The treatment would have seen Darcy given weekly infusions of enzymes as the disease destroys these.

Niomi, 22, said: “Darcy was diagnosed with the disease on March 8.

“It’s very rare and progressive and will lead to Darcy not being able to move and cause blindness.

“She will also have difficulties swallowing and have to be fed through a tube, while it will affect her speech.

“The doctor tried his best to get her on the trial.

“They’re not recruiting though at the moment and she’s not able to go.

“They do have treatment but only for people who aren’t showing symptoms.

“It’s absolutely devastating and you don’t think something like this will happen to you.”

Now Niomi and Adam want to make the most of the time Darcy has left and to raise awareness of the condition which affects one in 40,000 children.

She said: “There is a one in four chance that if we had another child, that they would have it, so we could go through IVF to avoid that.

“Any other child of ours who could have it would qualify for treatment.”

And Niomi said that her and Adam will be tested to see if they are carriers in the next few months.

She said: “We want to go on days out with Darcy to the zoo and make the most of our time before this disease progresses in her.

“We both want to raise awareness of the condition, as in the past there have been examples of children who have been diagnosed with autism and there symptoms can be very similar.”

A fund-raising page has also been set up by Niomi’s brother Michael, which has already raised more than £2,000.

To donate money, search for ‘Darcy’s Metachromatic Leukodystrophy Battle’ on GoFundMe.

For more information about MLD visit https://www.curemld.com/

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