A MUM has no idea how long she’s got with her little girl, as she is believed to be the only person in the world with a devastating disease.
Hannah Wood's daughter Layla, seven, is unable to eat, speak or use the toilet on her own, and has only just started to walk.
She spent a year in and out of hospital extremely unwell, leaving Hannah"absolutely terrified" she'll lose her.
But despite everything, Hannah says Layla is the "happiest girl on the planet".
Hannah, a mum-of-four from Ocala, Florida, USA, said: "She has such a positive light about her.
"Anyone who knows Layla knows she is a star.”
Layla has two genetic mutations, called the NFIX gene mutation, which causes developmental and intellectual delay, epilepsy, overgrowth, skeletal anomalies and vision impairment.
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She also has the BPTF gene mutation, which is linked to breathing issues, heart problems and childhood cancer, for which Layla is tested every year.
Hannah, 37, said: "The geneticist told us they believe she’s the only person in the world that has both of these mutations.
"This means they can’t tell us anything about how it will affect her, which is terrifying.
"We don't even know what her life expectancy is."
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It took more than a year of Layla missing "every milestone", including rolling over and even smiling, before Hannah says doctors really began to worry.
The mum, who lives with partner Dallis Crossin, 28, with whom she runs a handyman business, said: “She couldn’t sit up on her own until she was a year old.
"I had a mother’s instinct that something wasn’t quite right.”
Hannah's frustrations grew as doctors could not find anything wrong with Layla.
Hannah said: "It was so upsetting. As a mum, all you want is to see your children be happy and make progress, so it was rough."
In late 2016, at almost two years old, Layla began physical and occupational therapy, as she had significant developmental delays and was unable to walk.
Desperate for answers, Hannah drove for hours to various genetic testing centres across Florida every few months for blood tests.
But it was not until late 2018 that they finally had a diagnosis.
Recalling the moment Layla was diagnosed, Hannah said: "Being told my daughter had a result was a relief, we’d been waiting for so long.”
But Layla’s condition worsened after she was diagnosed, as she started vomiting and would “turn yellow and pale and become non responsive”.
Hannah said: "Her blood sugar would crash to 30, which is deadly, and in 2019 throughout the year she was in and out of hospital.
"I always sleep with her because I am terrified of not doing so, as she once choked when she was sleeping."
Layla's weight plummeted from an already low 35lb to just 23lb – the average weight of a two year old.
Hannah said: "I was absolutely terrified that I was going to lose her every time we took her to hospital.
"I was watching her – skinny, not being able to eat or drink and so, so pale. There were several times I’d sit next to her crying and praying.
"She had no colour to her apart from a yellowish tint. Her eyes were sunken and she was very thin."
Hannah says the family remains positive thanks to Layla's charm and joy.
Layla's genetic mutations mean she cannot speak or eat on her own. She still has to wear a nappy and needs 24-hour supervision.
But Hannah said: "I would never trade her for anything.
"Because we don’t know what the future holds, we just take it day by day and make the most of our time with her.
"But I still allow myself to dream of her growing older."
When Layla does hit a milestone – such as learning to walk on her own in the last year – it is a cause for celebration.
Layla will probably never talk, but in the last year she has started attending a special needs school which she "absolutely loves".
Hannah said: "We celebrate even the smallest milestones.
“If she goes to a new toy that she was nervous about, or uses her hands more, we’re always celebrating."
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"Layla’s joy and everything about her keeps us going. Anyone who meets her is overwhelmed by just how happy she is.
"There is a huge question mark over her future, but she is a lovely girl and we take life day by day."
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