'My little girl used to be able to pick up her toys, then all of a sudden she couldn't'

Lily Sloan's parents first noticed their little girl was unwell when she suddenly stopped being able to reach for her toys and began 'constantly grinding her teeth'.

After two months of 'regression' her worried parents, Scott Sloan, 31, and Amanda Lorimer, 33, took her to the hospital for tests.

Following a genetic blood test in December 2023 the couple were given the devastating news that Lily had a genetic disorder that causes severe physical and mental disability.

At just 14 months old Lily had been diagnosed with Rett syndrome, a rare condition which affects just one in every 10,000 children.

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Lily is also at risk of significant complications as she gets older - including seizures, anxiety and breathing problems. Neither parent carries the gene and it's been described as a "random occurrence."

Scott and Amanda say they are now "grieving all the firsts and experiences she'll potentially never have" and are devastated they will never see their little girl speak her first words and take her first steps - as well as getting married, getting a job and having kids of her own.

Amanda, a mental health nurse, said: "Nothing can really prepare you for your 14-month-old being diagnosed with an incurable condition. It's all about managing the condition as best we can, now.

"Lily gets a great level of support - she sees different therapists, and we try to help her the best we can at home. But you can't help but grieve the little things - like her not being able to say her first words."

Amanda hadn't experienced any problems throughout her pregnancy with Lily, who was a "healthy baby" in her first six months.

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