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Local News

Devoted mum’s ‘living grief’ at knowing her beloved children will die

today10/06/2021

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The mother of two terminally ill children has spoken out about the heartache of waiting for them to die.

Natalie Quinn’s children, Sam, 10, and Alice, five, both have an ultra-rare condition called juvenile Batten disease which is a fatal inherited disorder that affects the nervous system.

Children diagnosed with juvenile Batten disease have a very short life expectancy, with few making it past their late teens or early 20s.

Natalie told South Yorkshire Live she first realised something was wrong with Sam when he was just six years old, as his vision began to suffer.

Natalie, from Rotherham, said: “The first signs something wasn’t right, for both Sam and Alice, was trouble with their eyesight. Sam was six and Alice was just five when these issues became apparent.

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“They were both born and developed completely textbook and hit all their milestones when they should, so there was never any early indication that there was something different about them.”

Scarlett (centre), eight, is the only one of Natalie's children that does not have the condition
Scarlett (centre), eight, is the only one of Natalie’s children that does not have the condition

The onset of juvenile Batten disease usually occurs between the ages of five and 10, so Natalie was in the throes of dealing with Sam’s diagnosis when she was told the Earth-shattering news little Alice had the same condition.

“Sam was diagnosed in December 2019 and Alice was diagnosed in January this year,” Natalie said. “And because Batten disease is a genetic condition, myself and the children’s father had to be tested and we both carry one half of the faulty gene.

“This meant that every child we had together had a 1 in 4 chance of inheriting the full faulty gene resulting in a Batten diagnosis.”

Usually, the condition is so rare a child will have just a 1 in 50,000 chance of developing the condition, so it was a huge shock for Natalie to be told that not one, but two of her children had the condition.

And she has talked about the “living grief” of knowing her beloved children will die in early adulthood, a reality she has fought hard to shield her children from.

She said: “Alice and Sam don’t know the extent of their diagnosis. As an adult it’s such a difficult diagnosis to get your head around, so for a child it would be unfathomable.

“I don’t think a diagnosis like this is something you ever come to terms with or live comfortably with. It’s a constant cycle of living grief if you like, you are grieving for a child that is still alive and that is a very hard concept to grasp.”

Despite trying to keep the cruel reality hidden from her three children, including eight-year-old Scarlett who does not have the condition, Natalie’s children have reached an age where they are curious to know what is wrong.

“Sam has asked why his eyes don’t work and I explained to him that there is something in his brain that makes it work differently to others and we’ve gone the same route for Alice,” Natalie said.

She added: “Their sister Scarlett, who is eight, is getting to the stage where she is asking questions and we do our best to explain to her in a way that won’t absolutely destroy her childhood.”

Sam’s eyesight has deteriorated so much now that he has only a small amount of peripheral vision left, meaning he is nearly completely blind, and Alice has “bullseye vision” which means that she sees in ‘rings’ of clear and blurred vision.

But Natalie has said that these difficulties have not stopped the kids from enjoying their childhood.

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She said: “Living with visual Impairments has been a huge challenge for us, but we try to enable and advocate for the children as much as we possibly can.

“Their school, dance school and swim school have all been incredible at making adjustments to assist the children in every activity they do.”

The family recently ticked off a “police day” from their bucket list, where they were taken around one of the National Police Air Service bases in South Yorkshire, to meet some of the officers and see what they get up to.

Sam, Alice and Scarlett were overjoyed to spend the day watching the Mounted Division and meeting some of the horses, as well as getting the chance to sit in a police helicopter – which was a dream come true for the children.

And Natalie said the visit was “truly magical”, with the family getting the chance to make some irreplaceable memories.

Though Natalie is now bearing the burden of knowing that her beautiful children will die before she does, she has paid thanks to her loving partner who she said has made a huge difference in helping her to deal with the heartbreak.

She said: “It makes all the difference to have someone to be able to talk to. Even though you are surrounded by people who want to help and support you, it can still be an incredibly lonely place to be.”

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Written by: Rother Radio News


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today10/06/2021