Mother's heartbreaking tribute to daughter, 9, following death in wake of devastating diagnosis

The mother of a young girl from Oldham who lost her life to a form of dementia has paid tribute to the 'happiest soul' she has 'ever met'. Skyla-Rae Christine Clegg, who lived with Sanfilippo Syndrome, died on January 9 - less than a week after her ninth birthday.

"Skyla was the happiest soul I've ever met, her smile would light up a room," mum Stacey Reynolds, 28, said. Her daughter's life was thrown upside down when, just two days before the 2020 Coronavirus lockdown, she was diagnosed with the extremely rare genetic condition, sometimes called childhood dementia.

Stacey, who works as a carer, said the diagnosis 'shattered' her world and left her isolated. "Everything happened so fast, I didn't even have a chance to figure out the diagnosis as she was constantly in and out of hospital," she added.

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Children diagnosed with Sanfilippo Syndrome experience a mental decline over time, gradually losing their ability to walk, talk and eat. There is no known cure and sufferers have a greatly reduced lifespan.

Stacey added: "She used to love to dress up and play with her brother and sister, but she then became non-mobile. She lost her speech and she had to have feeding tube cuddles, which made her the happiest, as well as being with me and her siblings."

Despite all of these difficulties, Skyla's mum described how her brave girl, then aged just five, would encourage the rest of the family to keep smiling, adding "We did make it work, but really she made it work. She got us through it with her smile and laughter."

In 2023, Skyla experienced a series of medical episodes related to her disorder, including three cardiac arrests and one