Brave Baylie contends with health battles
A young Clifton Springs woman with two very rare disorders has been in hospital for more than six weeks after her health declined.
Geelong
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When Baylie Foster was a baby, medicos told her mum Keri East she’d likely never walk.
But the brave young Clifton Springs woman defied the odds and usually racks up 20,000 steps a day.
However the 24-year-old can’t currently get out for daily exercise because she has been in Geelong hospital for more than six weeks.
Ms Foster lives with two incredibly rare disorders.
As a baby she was diagnosed withPhelan-McDermid syndrome, which impacts speech, mobility, and cognitive development.
Estimates suggest it occurs in about two to 10 per million births, but prevalence is likely higher due to how hard it can be to diagnose.
Ms East said her daughter also has an even rarer condition, ring chromosome 22, which is linked to the Phelan-McDermid syndrome.
Ms East said ring chromosome 22 means Ms Foster is susceptible to tumours on her brain and spine.
She has two small cysts in her brain and has MRIs to monitor these.
As a baby Ms Foster did not roll over or crawl.
“When she got to about two-and-a-half doctors stated talking about wheel chairs,” Ms East said.
“We were basically told she’d be a floor baby and she’d never have any movement.
“I’m one of those pushy mums who’s like, ‘don’t put limitations on my kid’.”
Ms Foster learnt to walk in a jolly jumper connected to a walking frame and could eventually walk independently.
“Never say never,” Ms East said.
Despite being non-verbal, Ms Foster is “very expressive” with her face.
“She’s definitely a really big personality,” Ms East said.
“She’s such a happy kid when she’s well.
“To know her is to love her.”
Ms Foster enjoys an active lifestyle - walking with her carers, horse riding and visiting trampoline centres.
But she does battle bowel problems.
And her health took a turn this year – she developed an ear infection and had multiple courses of antibiotics.
Ms East said Ms Foster wound up at the emergency department and was administered ketamine for pain.
Colon ulcers were identified.
She remained in hospital, and needed to spend 24 hours in intensive care recently.
Previously Ms Foster could consume food normally, but Ms East said her daughter will require surgery where a tube will be inserted in her stomach to administer food and medication long-term.
Ms Foster has lost more than 20 kilograms since her health deteriorated and is struggling with weakness.
“All her muscles have deteriorated,” Ms East said.
“Life’s going to look very different for her for quite a while.”
A GoFundMe page has been established to fundraise for a special walker and modifications around the home to make life easier for Ms Foster.
“It was a very hard decision for me because I’m a very proud person,” Ms East said.
“I’ll just have to suck it up because it’s not about my pride, it’s about Baylie.
“Every spare cent goes towards her gaining her independence.”
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Originally published as Brave Baylie contends with health battles
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