A mum has said she's 'terrified' after her two children were diagnosed with the condition that tragically killed her husband.
Donna Taylor, 35, from Liverpool, lost her husband unexpectedly to a disease known as Neurofibromatosis (NF1) in June, leaving her a single mum to their two children.
It is a genetic condition which, the NHS reports, causes tumours to grow alongside a person's nerves, which, though typically not cancerous, can cause a number of problems.
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People are typically born with the condition, which is why Blake, five and Willow, four, were tested.
Their dad Kieran, 32, died when a tumour developed on his abdominal gland which caused him to suffer a bleed on the brain.
Taylor told NeedToKnow.Online: "As a mum, I am scared for them - I'm terrified.
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"I had only started calming them down and then [this] happened with Kieran and now my anxiety has gone back up.
"I don't want my kids to have to go through what their dad did but I know they will have to, because it's their condition.
"Blake was four months old when we spotted 'café au lait'- like spots all over his body, a common symptom of the condition. Then we spotted the spots on Willow at around eight months and she has the tumour on her nerve, behind her left eye.
"She has to wear glasses and we have to keep a close eye on her.
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"Both kids have to have yearly check-ups and eye tests, ear tests - everything. It's draining - but I have to do it for my kids, they come first and always have."
Recounting the events before her husband's untimely death, Taylor said Kieran's condition deteriorated to the point where he was found unconscious in his garden.
Doctors told her he was critical at this point and he was put on life support.
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They revealed that he had been left with catastrophic damage on the left side of his brain and that it would be in his best interests to let him pass away.
She said: "I couldn't believe what I was being told, as he never used to get sick and the one time he does, it kills him.
"I felt all sorts of emotions: angry, hurt, heartbroken, sad - I kept thinking that I absolutely hate this condition.
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"It seems like my family never get a break and there's always something for us to worry about - especially how my babies are going to cope.
"I don't know how I'm going to explain this to them and when they aren't around, this is when it gets to me.
"I sleep with one of his t-shirts every night, just so I can smell him and feel like he's next to me.
"He was in no pain and had no knowledge of what was going on - but he had all the family around him as he passed."
The mum said she has been left 'destroyed' by her husband's death and fears she could reach 'rock bottom' again but is trying to stay strong for her children.
She acknowledged that while their diagnosis is terrifying, it is 'very rare' for it to lead to death like it did for Kieran, adding: "People say [my kids] don't understand, but they do and they miss him dearly.
"A couple of years ago, I reached rock bottom and I'm scared in case I get there again - this has destroyed me.
"I'm a strong person and have to be there for my babies and I know it's not what he would want, so I'm carrying on for him.
"We've set off balloons [to celebrate him] and have bought a bench which has his name on it. We sit there at night and talk to him, as he can hear everything we say.
"I still can't believe he's gone and I know this is very rare to happen with NF1 - my husband was the unlucky one.
"My kids are my life and I will fight for them until I am blue in the face to get them what they need."
Topics: Health
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Emma Guinness