Hope and heartache for Shilbottle family as daughters battle rare brain disorder

A Shilbottle mum and dad are facing heartache after their two daughters were diagnosed with a rare brain disorder and only one can receive treatment.

Thursday, 26th May 2022, 12:15 pm

Ally Wallace and her fiance Jake Shaw were devastated when two-year-old Nala and her 11-month-old sister Teddi were diagnosed with the genetic disorder Metachromatic Leukodystrophy or MLD.

Tragically, Nala is not expected to live beyond childhood and is unable to receive treatment because her brain has deteriorated too far already.

However, there is hope for Teddi who is set to begin pioneering gene therapy treatment next month.

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Nala and Teddi.

“Being told one of your children can be saved and one can’t is quite possibly the hardest news to hear,” said Ally.

“It’s absolutely gutting and so upsetting that it’s impossible to describe.

"Nala is our first baby and has brought so much life into our lives. She is so funny and such a character.

"It’s been so hard watching her deteriorate to the point where she can hardly do anything for herself. Watching your baby go that way is heart-breaking.”

Ally, 32, and Jake, 29, had been concerned about Nala’s walking difficulties for many months before an MRI finally brought a diagnosis.

Teddi was then brought in for tests and also found to have the disease.

“Teddi has been caught quickly enough and can receive gene therapy treatment, but will also need chemotherapy,” revealed Ally.

"It will mean long stays at Manchester Children’s Hospital and it will be such gruelling treatment for such a young baby.”

She is scheduled to receive the first stage of her treatment on June 21 – the day after her first birthday.

“She is beyond lucky to be getting life saving treatment but it's going to be a long and hard road for such a little person,” said Ally.

Teddi will be the first child to receive this treatment in the UK on the NHS. It was only approved in February.

"It has been a success for everyone that has gone on the trial,” said Ally. “They have gone on to continue their normal life and not show any signs of MLD so we’re hoping and praying that will be the case for Teddi.

"We just wish both our children had been caught quickly enough.”

They have launched a fundraising appeal to help cover some of the costs they will incur in the coming months and years.

“We want to raise money for a number of reasons,” said Ally.

"Mainly it’s to help Nala enjoy the rest of her life, whether that be holidays, days out or medical equipment to make her more comfortable. We’re trying to create memories.

"But also in case any trials become available that Nala may be eligible for that we'd need to pay for or get her to another country.

“The money is also for Teddi and to cover some of the travel, food and accommodation costs we’ll have during her time in Manchester.”

The couple, who are due to get married on June 16, would like to thank everyone for their love, support and kindness so far.

“We've been truly overwhelmed with everyone's messages, thoughts and gestures,” said Ally.

A fundraiser is also being held at Shilbottle Community Hall on July 30 from 1pm-4pm.