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The couple said both daughters had a life-limiting illness – but only one could be saved

Ally Wallace and Jake Shaw found their daughters Nala and Teddi had a genetic condition that affected the “white matter” of their brains

Ally Wallace and Jake Shaw discovered that Nala, two, and Teddi, 11 months, both have a genetic condition
Ally Wallace and Jake Shaw discovered that Nala, two, and Teddi, 11 months, both have a genetic condition

A couple have been told their two daughters are suffering from a horrific life-limiting disease – but only one of them can be saved.

Ally Wallace and Jake Shaw have discovered that two-year-old Nala and 11-month-old Teddi have a genetic condition that affects the “white matter” of their brains.

The diagnosis also causes the loss of their children’s physical and mental abilities.

However, Nala cannot be treated for Metachromatic Leukodystrophy (MLD) because her brain has already deteriorated too far.

ChronicleLive reports that she will continue to lose all functions and is not expected to live past infancy.

Teddi was tested for MLD after Nala was discovered to have the disease earlier this month.







Ally Wallace and Jake Shaw discovered that Nala, two, and Teddi, 11 months, both have a genetic condition
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Picture:

Chronicle Live)

As the 11-month-old daughter’s condition is not yet at an advanced stage, she may undergo life-saving gene therapy treatment in Manchester next month.

Ally and Jake, who live in Northumberland, were both carriers of the same ‘faulty’ gene and there was a one in four chance they would pass it on to their children.

The mother-of-two said: “We were absolutely devastated. I think it was even harder to hear that one of them can be treated but one of them cannot be saved.







Teddy is 11 months old
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Picture:

Chronicle Live)







Nala is the couple’s older sister and is now two years old
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Picture:

Chronicle Live)

“It’s just awful because Nala was such a character.

“She’s not that hilarious little girl who sings along to Frozen every day and now she can’t even move. She can no longer feed herself or play with her toys.

“Nala saved Teddi’s life. If Nala hadn’t had the disease, Teddi’s illness would not have been found quickly enough. We will carry on the legacy that she saved her sister’s life.

“It’s heartbreaking, but it’s the reality.”







Jake and Nala enjoy their time together
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Picture:

Chronicle Live)







Jake and Ally with Teddi who has the same illness
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Chronicle Live)

Ally first took Nala to see a doctor after she was concerned about her daughter’s foot position and walking difficulties, which included walking on the inside of her foot.

Her mobility deteriorated and she developed tremors in her hands. Doctors began looking into neuromuscular disorders and she was put on a waiting list to see a pediatrician.

Ally, who works as a bartender, said: “Nala had these episodes. She started crying and it was impossible to calm her down.

“She was shaking so much it was almost like she was having a seizure. It happened two nights in a row and on the second night I decided to call an ambulance.

“By this point, she could no longer stand on her own and could barely get off the sofa.”







Without Nala’s diagnosis, Teddi’s (pictured) condition would not have been discovered
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Picture:

Chronicle Live)







The two sisters Teddi (l) and Nala (r) together
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Chronicle Live)

She said Nala was taken to the Royal Victoria Infirmary (RVI) in Newcastle, where she underwent an emergency MRI scan because she feared she had a brain tumour.

Ally and Jake, who works as a carpenter, were then told that Nala has MLD.

“I had no idea what it was. At first I was relieved because for months I thought she had a brain tumor,” Ally said.

“After the doctor left the room, Jake went to Google and he went quiet and white.

“He said, ‘I just googled it and it’s not good, I saw the life expectancy’. At that point I told him I didn’t want to know.”

Because the condition was genetic, Teddi was taken to the hospital for tests, and it was discovered that he also had the disease.







Teddi was taken to the hospital for tests and was found to have the same condition
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Picture:

Chronicle Live)







Both children suffer from a genetic disease that affects the “white matter” of the brain
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Picture:

Chronicle Live)

Ally said: “It’s incredibly unfortunate that both parents have this gene. If we both have the gene, there’s a one in four chance of passing it on, and we’ve passed it on to both children.

“It’s extremely rare, affecting one in 40,000. I’ve never heard of it and I don’t think anyone around me has.”

According to the NHS, there was previously no treatment for the brain disorder.

However, in February this year, the NHS struck a deal for gene therapy, which is said to be the world’s most expensive drug.

Teddi will start her treatment, which includes chemotherapy, on June 21 at the Royal Manchester Children’s Hospital.

Ally said: “Just the thought of her little body bolting is unthinkable. We focus on the fact that this will hopefully save her life.

“They will remove one of her ovaries and freeze it for future use as the treatment she is having will render her infertile. It’s just not something you think about when she’s not even one.”

Nala’s health has deteriorated over the past few months and she will likely need a stake to feed her for the next several months.

“The life expectancy of a child with MLD is between five and eight years.

Ally said: “I can tell she’s frustrated because she can’t understand why there’s nothing more she can do.

She’s only two, so we can’t tell her what’s going on either. She doesn’t understand what’s happening to her body and why she can’t do anything anymore.

“She will be aware of everything that is happening around her, but she will not be able to control her own body.”

Ally set one up Page on GoFundMe to raise funds so they can take Nala to Disneyland and buy gear to make her feel more comfortable.

Some of the money will also be used to support Teddi’s treatment.

She said, “We’d love to take Nala to Disneyland if possible, we’d like to do as much with her as we can before she leaves.”

Her close friend is also hosting a fundraiser to raise money for the family.

Ally added, “I just want to say a huge thank you to absolutely everyone who has messaged, donated and supported us so far.”

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https://www.mirror.co.uk/news/uk-news/couple-told-both-daughters-life-27089320 The couple said both daughters had a life-limiting illness - but only one could be saved

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