Baby given just months to live due to rare condition inherited from BOTH parents’ genes


Exclusives:

Only 100 people worldwide are thought to suffer with Olivia’s condition, which means the tot from Hartley Wintney, Hampshire, is unlikely to live more than another six months

Olivia has a condition which is thought to affect only one in 79,000,000 people

The parents of a little girl with months to live have described their horror after learning her ultra rare condition was caused by a gene defect they both carry.

Steve Wright, 31, and Beth Randall, 27, had enjoyed a straight forward pregnancy and birth when they welcomed their first baby, Olivia, into the world in February 2021.

But the couple from Hartley Wintney, Hampshire, knew something wasn’t right when Olivia seemed to go off her food at six weeks, and started losing weight.

Their world was then turned upside down, when genetic testing confirmed Olivia, now 14 months, had a type of Congenital Disorder of Glycosylation known as ALG-6-CDG, meaning she is unlikely to live past her second birthday.

The condition affects her ability to absorb the nutrients she needs from food and is so rare it is thought to only occur in one in 79,000,000 people.







The couple want to make Olivia’s final months the best they can be
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Image:

SteveWright)

Even more devastatingly, Steve and Beth learned that they were both carriers of an extremely rare gene defect – meaning one in four of their children is likely to be born with the condition.

Supply chain manager, Steve told The Mirror: “It was absolutely terrifying.

“We thought she was going to be discharged but they called us into a meeting room with six specialists, her consultant and a few other doctors.

“We knew it wasn’t good news but then they told us it was unlikely she would live past her second birthday and we just went into shock.

“They were trying to explain this extremely rare condition to us but we were both blacking out going into a daze.







The couple were devastated to learn that Olivia has an ultra rare condition thought to only affect 100 people across the globe
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Image:

SteveWright)







Steve and Beth had their world turned upside down when Olivia took a turn at 6 weeks
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Image:

SteveWright)

“We went through a long phase of feeling guilty like it was our fault she was ill and it was a major concern that any future children we might have could fall ill too.”

After noticing that Olivia was losing weight, the couple took her to the hospital for a check up.

Within hours they were blue-lighted from Frimley Park Hospital to Southampton General as doctors rushed to run tests and find answers.

It was only when the experts fast-tracked some genetic tests that the parents discovered they were carriers for the rare condition.

Steve said: “Doctors were rushing around covering her in wires and tubes all of a sudden and we had no idea what was going on.

“That was the scariest part, not having the answers. One day Beth called me and told me that Olivia had stopped breathing in her arms.

“I ran to the hospital in minutes and by the time I had got there they had resuscitated her but I can’t describe the feeling of terror, it was one of the worst moments of my life.”

As a result of her condition, Olivia has to be fed her nutrients intravenously for 14 hours a day, and has an extremely strict list of normal foods she can eat, which are only there to improve her quality of life and let her enjoy taste.

She suffers with fatigue, low muscle tone, meaning she can’t support the weight of her own head, and some days she is in so much pain that “all she can do is scream.”







Little Olivia had to be fed intravenously for 14 hours a day
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Image:

SteveWright)







Olivia was taken to three different hospitals as doctors tried to find answers
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Image:

SteveWright)

Now her parents are on a mission to make her final months as fun and enjoyable as possible, setting up a GoFundMe to fill their house with sensory toys galore.

Realizing that this summer might be the only one she sees, they are determined to transform their run down council house garden into a sunny, sensory oasis for Olivia.

The couple have already been approached by local landscaper, Andrew McCourt, who has offered his services free of charge to transform their backyard into a perfect escape.

But the couple need a little bit of extra help to fill the garden with the kind of toys that Olivia can enjoy.

Steve said: “We have to try and stay positive for Olivia but some days it is difficult when you can see that she’s frustrated or bored or in pain.







The couple are now trying to transform their garden for what could be Olivia’s last summer
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Image:

SteveWright)

“Beth is her around the clock carer now and we know that we will never be able to take her abroad or probably even on a staycation holiday in the UK.

“Her intravenous nutrients need to be connected and disconnected in a completely sterile environment, some of her meds have to be temperature controlled and the whole thing would be just too stressful.

“We know this will probably be her only summer with us so we want to make it as special as possible.

“If it got to Christmas and we lost her and I didn’t know that I had done absolutely everything to make every minute we have with her as perfect as possible, I would never forgive myself.”

To donate to the GoFundMe, click here

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www.mirror.co.uk

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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