Mom of Terminally Ill Kids Gets Real About the Pain of Inevitable Loss | It's Like "Grieving for a Child That Is Still Alive"

Mom of Terminally Ill Kids Gets Real About the Pain of Inevitable Loss | It's Like "Grieving for a Child That Is Still Alive"

Natalie Quinn and her husband were found with one-half of the faulty gene of that causes Batten disease.

No mother would ever want to count the number of days she has with her children. But sometimes, fate puts them in such heartbreaking circumstances.

According to Metro, Natalie Quinn's children, 10-year-old son Sam and five-year-old daughter Alice, are both battling juvenile Batten disease. The inherited disease, which impacts 1 in 100,000, affects the nervous system and reduces the life expectancy to late teens or early adulthood.


The mother, who knows the days of her children are numbered said that she felt like she was "grieving for a child that is still alive."

Quinn from Rotherham noticed the first symptoms of the illness in her son Sam about four years back. Recalling the events, she stated, "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."

Sam was diagnosed with the health condition in December 2019. It was followed by Alice's diagnosis in January 2021.


Quinn was completely shocked as she did not expect such a fate for her beloved kids. She stated, "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."

Shortly after her children were found to have the genetic condition, Quinn and her husband were subjected to a few tests. The reports of the tests revealed that each of them carried 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," said Quinn.


The devastated mother is now left with the task of shielding her children from knowing their fate. "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," said Quinn.

She added, "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."


Aware of the dreadful future, Quinn started a fundraiser to fulfill all the wishes of her kids. "We have started saving up to take them back to Disneyland so we can give Alice her dream of being a princess for the day. We are also trying to plan other little trips and experiences we know that Sam and Alice will love so we can make as many happy memories as possible with whatever time we have left," wrote the mother.

Quinn also has another daughter Scarlett, who has not been diagnosed with the condition.




Cover Image Source: Just Giving Crowdfunding page

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