Family’s struggle for answers as baby battles mysterious ‘floppy infant syndrome’
A family faces huge challenges as they desperately seek a diagnosis for their 14-month-old daughter, who is battling a mysterious, undiagnosed disease.
Yasmin Whittington’s daughter Elyza, 30, of Brechin, Angus, is affected by an unknown condition that manifests itself as persistent illness, malnutrition, reduced muscle tone and chronic fatigue.
Symptoms first appeared when Elyza was just two months old, leading to months of hospitalization and numerous diagnostic tests to detect her condition.
Her mother, Mrs. Whittington, had to quit her job to provide full-time care for Elyza.
She said: “It all started when Elyza was about two months old. She started getting sick, wasn’t eating right and was very limp. “I knew something wasn’t right.
“He had almost no muscle tone and was sleeping about 21 hours a day. He just wasn’t developing the way he was supposed to.
“We are still waiting for a diagnosis for almost a year. Elyza was hospitalized for over three months of her life, and this is something doctors are still working hard to understand. This has been very difficult for all of us.”
He added: “Elyza has just started sitting up and can’t feed orally. She is fed through a tube and is struggling to gain weight. “She’s closer to a five- or six-month-old baby in terms of development.
“Doctors are trying to figure out the best way to move forward.
“I went from mother to nurse pretty quickly, I now live and breathe everything that comes with her care. You adapt because you have to.”
Mrs Whittington lives with her husband Charles, 31, and their three other children: Isaac, 7, Alfie, 5, and Isla, 2.
She said doctors initially thought her daughter’s illness was “floppy baby syndrome” but believed there must be an underlying cause.
Elyza also has serious gastrointestinal issues, so she may soon have to rely on a feeding tube going directly to her stomach.
Ms Whittington is taking part in the Kiltwalk challenge in Glasgow to raise money for the Archie Foundation, a charity set up to improve healthcare for children.
The family thanked the charity for helping to make a difference in their daughter’s life by providing her with a special car seat that supported Elyza’s low musculature.
Ms Whittington said: “This was a life changer. They helped us arrange the car seat within two weeks.”
“It’s very expensive to travel back and forth and spend time in the hospital. They took a huge financial burden on us during a really difficult time.
“When we felt like everything was overwhelming, Archie’s support reminded us that we were not alone.”
Ms Whittington will join the walk with friends Zoe McCormack, 30, and Rohana Dewfall, 29, and plans to raise more money during the Dundee Kiltwalk later this year.
He said: “I’m not a very good runner so I thought the Kiltwalk would be a nice way to say thank you to the Archie Foundation, which I think I can complete with limited training given we’re in hospital most of the time at the moment.
“Going for a walk at times like this is really good for your mental health, so I’m really looking forward to starting training properly once Elyza is feeling better.”
He added: “No matter what, we’re learning what our new normal looks like and doing everything we can to give him 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 help they need.
“Caring for a child with complex needs can be very challenging and no family should have to face this situation alone.
“It’s incredibly heartwarming to hear that Yasmin will be taking part in the Kiltwalk to raise money for our charity and everyone at the Archie Foundation would like to wish her well in this challenge.”
