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A Sunderland mum is trying to help raise £580,000 for a drug which could prevent her two-year-old toddler from going senile.
Jack Baird has the extremely rare Sanfilippo disease, a generic condition which destroys brain function and physical ability.
Speaking to her local paper his mum Gemma, 29, explained that she knew Jack had something wrong with him from when he was a baby:
"Jack was diagnosed when he was 16-months-old, but I knew there was something wrong with him before that because of the way he slept.
"He had bowel problems and his nose was always running. Doctors would fob us off and give us antibiotics. But then the health visitor noticed that his head was enlarged and he went for tests at Sunderland Royal."
Gemma said she was left feeling numb when medics told her that baby Jack was likely to have dementia before he reached school age, and was unlikely to survive past his teenage years.
"It was like they were talking about another person's child," the mum-of-two said. "When they told me to enjoy the time we had left, I was numb."
She is now desperately trying to help raise the money to trial a drug which could slow down Jack's illness. He and 19 other children have been selected to take part in a trial at Manchester Children's Hospital, but they need to raise £580,000 to fund the treatment.
"I couldn't process the information when Jack was diagnosed," Gemma said. "I have come to terms with Jack dying but what I can't come to terms with is him suffering. He is such a happy little boy. I get scared by the uncertainty of how his condition will progress."
What a heartbreaking story. Let's hope Jack gets the drugs he needs. His fundraising site is at Shareagift.com/jack