A little girl from Halifax has died after a 10-year battle with a rare genetic brain disorder.
Olivia Doyle was born with Rett syndrome – a rare genetic disorder affecting brain development – which left her severely disabled and requiring round-the-clock care from her doting parents.
Rett syndrome, which almost exclusively affects girls, is characterised by normal early growth and development and then a slowing of development, including the loss of hand movement and problems with intellectual ability.
Olivia’s heartbroken dad, Michael Chappell, 26, said that despite being 10 years old, Olivia’s brain capacity only ever reached that of a three or four month old.
Michael told South Yorkshire Live: “She was very rare, there’s different stages of Rett – some girls can live until they’re well into old age but our Olivia was very special.
“Another girl we know with Rett can walk and talk, whereas our Olivia couldn’t talk, she couldn’t walk, she couldn’t eat orally so everything was straight into her stomach.
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“Olivia visited hospitals regularly because she was that complex and doctors would often say that she was one in her own, they’d say ‘well children don’t typically do this or present that way’ but Olivia would go against that and present that way.”
Olivia needed so much care from her parents that Michael described her as a “24/7 child” and this was compounded recently when she was diagnosed with Lennox-Gastaut syndrome, a severe form of epilepsy.
But despite battling such debilitating conditions, Michael said that Olivia was a happy child and would make her family smile by showing off her personality and giving them the occasional bit of attitude.
“It wouldn’t matter what time of day it was, if she wanted to cry the house down, she could cry the house down – whether it be midnight or the middle of the day”, Michael said.
He added: “But if she wanted to be up and about with everyone in the room then she’d be happy and clappy and smiley with everything, if she didn’t want to be in the room she’d roll her eyes at you.
“Because she was non verbal we couldn’t ask her [if something was wrong], you had to figure out what the problem was or what the issue was or if she was in pain, you had to work it out yourself.”
Olivia’s devastated family, which includes her mum Katie, 28, and sisters Annabelle, three, and Lacey, eight, are now “lost” without Olivia in their life, as her tragic death came as such a shock.
Michael said: “We all feel lost, she was a big part of everyone’s life, a very big part.
“It’s [Katie’s] first born child, it’s 10 years and it’s happened the wrong way around – it’s often parents go before children, not children before parents.”
Michael added: “Annabelle doesn’t really comprehend, she knows that Olivia’s gone to heaven but it still gets her sometimes because she still asks ‘where’s Olivia?’.
“Lacey is a lot more aware that Olivia’s passed away, because she’s older and also lost her grandma six months previous, so she kind of gets the jist of what’s happened, but it’s her sister at the end of the day so she’s going to find it as hard as anyone, she’s grown up with her.”
Girls with Rett syndrome commonly live into their 30s or 40s, so Olivia’s family did not even get a chance to prepare for her death as it was so sudden and unexpected.
Michael said that doctors had not given him or Katie a life expectancy, so they had no way of knowing that they would lose their beloved daughter so young.
Olivia was taken to the Forget Me Not hospice in Huddersfield in the days before her death, so that she could be comfortable and spend time with her family, many of whom had travelled up from Birmingham to be with her.
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Michael said that he will remember his daughter as the “happy smiler” that she was.
But the family are now dealing with the added stress of losing some of their income, as Olivia’s condition meant that the family additional benefits to help them – including a family car, which they have now lost.
“It shouldn’t revolve around money but all money will now get stopped, so it’ll be an added stress as well as all the other bits”, Michael said.
Michael has set up an online fundraiser and said that some of the donations will also go toward the Forget Me Not hospice and the Rett UK charity.
If you would like to donate to the fundraiser, you can do so here.
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