HomeLife StyleFamily’s struggle for answers as baby battles ‘floppy infant syndrome’

Family’s struggle for answers as baby battles ‘floppy infant syndrome’

A family is enduring significant hardship as they desperately seek a diagnosis for their 14-month-old daughter, who is battling a mysterious, undiagnosed illness.

Elyza, the daughter of Yasmin Whittington, 30, from Brechin, Angus, is afflicted by an unknown condition manifesting as persistent sickness, poor feeding, diminished muscle tone, and chronic fatigue.

The symptoms first emerged when Elyza was just two months old, leading to months of hospitalisation and numerous diagnostic tests in an attempt to identify her ailment.

Her mother, Ms Whittington, has been forced to leave her job to provide full-time care for Elyza.

She said: “It all started when Elyza was about two months old. She began being sick, she wasn’t feeding right and she was very floppy. I knew something wasn’t right.

“Her muscle tone was almost non-existent, and she would sleep around 21 hours a day. She just wasn’t developing the way she should.

“Almost a year on we’re still waiting for a diagnosis. Elyza’s been in hospital for more than three months of her life and it’s still something doctors are working hard to understand. It’s been very tough on all of us.”

Yasmin Whittington with her husband Charles and their daughter Elyza, who suffers from an unknown condition that causes sickness, poor feeding, low muscle tone and chronic fatigue
Yasmin Whittington with her husband Charles and their daughter Elyza, who suffers from an unknown condition that causes sickness, poor feeding, low muscle tone and chronic fatigue (The Archie Foundation/PA Wire)

She added: “Elyza’s only just started sitting and she can’t feed orally. She’s fed through a tube and struggles to gain weight. Development-wise she’s closer to a five or six-month-old.

“Doctors are trying to figure out the best way forward.

“I’ve gone from mum to nurse quite quickly, I live and breathe everything about her care now. You just adapt because you have to.”

Ms Whittington, lives with husband Charles, 31, and her three other children, Isaac, seven, Alfie, five, and Isla, two.

She said doctors initially thought her daughter’s illness was “floppy infant syndrome”, but believe there must be an underlying cause.

Elyza may also soon have to rely on a feeding tube directly to her stomach as she suffers from serious gastrointestinal problems.

Ms Whittington is taking part in Glasgow’s Kiltwalk challenge to raise money for The Archie Foundation, a charity established to improve healthcare for children.

The family credited the charity for helping make a difference to their daughter’s life, providing them with a special car seat that supports Elyza’s low muscle tone.

Elyza may also soon have to rely on a feeding tube directly to her stomach as she suffers from serious gastrointestinal problems
Elyza may also soon have to rely on a feeding tube directly to her stomach as she suffers from serious gastrointestinal problems (The Archie Foundation/PA Wire)

Ms Whittington said: “It’s been a life changer. They helped us get the car seat organised within two weeks.

“It’s so expensive when you’re travelling back and forward and spending time in hospital. They’ve lifted a huge financial burden for us during a really tough time.

“When everything felt overwhelming, Archie’s support reminded us that we weren’t alone.”

Ms Whittington will take part in the walk with her friends, Zoe McCormack, 30, and Rohana Dewfall, 29, and plans to raise more money later this year during the Dundee Kiltwalk.

She said: “I’m not a great runner so I thought the Kiltwalk would be a nice way to say thanks to The Archie Foundation, that I’d be able to complete with limited training, given we’re at the hospital a lot of the time just now.

“Getting out and about for walks is really good for your mental health at times like this, so I’m really looking forward to starting training properly once Elyza is feeling better.”

Yasmin and her husband Charles have have spoken of the hardship they have faced in getting their daughter a diagnosis
Yasmin and her husband Charles have have spoken of the hardship they have faced in getting their daughter a diagnosis (The Archie Foundation/PA Wire)

She added: “Whatever happens, we’re just learning what our new normal looks like and doing everything we can to give her the best life possible.”

Reti Turner, senior fundraising officer at The Archie Foundation, said: “We’re proud to support families like Yasmin and Elyza’s, helping them access the practical and financial assistance they need.

“Caring for a child with complex needs can be overwhelming, and no family should have to face it alone.

“It’s incredibly heartwarming to hear Yasmin is taking part in Kiltwalk to raise money for our charity, and everyone at The Archie Foundation would like to wish her well in the challenge.”

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