Stories

Lily died at just under six-weeks old. She had Neonatal Epilepsy.

Arlo has a rare genetic neurological condition called Hyperekplexia, a startle disease which means he goes stiff and can’t breathe.…

23-month-old Renessme started experiencing seizures when she was eight weeks old and her parents, Mariana and Cristian, said no one…

Two-year-old Kian has two rare chromosome conditions which affect his development and quality of life and has spent half of…

When Katie gave birth to her daughter at just 23 weeks, no one expected her to survive. Against all the…

Last summer, our daughter, Erinne, died from a highly aggressive and incurable brain tumour. She was just seven years old.

Lexi was born almost five weeks early with a congenital heart defect. Last year, shortly after turning 17, Lexi died…

Robin, suffered a stroke in the womb. Robin is believed to be the youngest ever stroke survivor in the country.

When Felicity was diagnosed with a brain tumour at the age of three, her parents were told there were no…

The mother of a two-year-old who has already exceeded her life expectancy, says her amazing daughter is the definition of…

Fifteen-year-old Kiya has MELAS, a mitochondrial disease, and at one point, her parents Rebecca and James, were told they wouldn’t…

Four-year-old Amelia has a rare disorder which means she has a chromosome deletion and a duplication, which affects her development…