What We Do

Coles Care for Kids 2011

Wednesday, 05 October 2011 11:52

Rushing your baby to hospital is a mother's worst nightmare.

But for Kylie, mother of three, it is just part of everyday life. Amelia, Kylie’s first born, was only 8 months old when she was first rushed to hospital, struggling to breathe. She was hurried to hospital countless more times in the following 8 months with the same problem. Doctors couldn’t diagnose Amelia’s condition. They couldn’t explain to Kylie and her husband why Amelia sometimes struggled to breathe - all they could do was ease her symptoms.

“The hardest part of all is the not knowing - not knowing what's wrong with my daughter, and not knowing if or when she'll next wake up with frightening breathing problems, and have to be rushed back to hospital.”

When Kylie was expecting Thomas, her second born, scans at 31 weeks showed that he had extra fluid on the brain, known as unilateral Ventriculomegaly.    “When he was born, we actually had a list of things that may have been wrong with him.” After birth, Thomas underwent many tests in hospital, and there were ongoing observations and monitoring.  After several specialist appointments, another ultrasound was done and at 8 months, thankfully, it showed that the fluid had disappeared.

Xavier, Kylie’s third, was diagnosed when he was six days old with Medium chain acyl CoA dehydrogenase (MCAD) deficiency. This is a complex disease that affects 1 in 20,000 births, with around 4 being diagnosed in Queensland each year.  It means that Xavier can’t burn his stored fats, he cannot fast for anymore than 8 hours at a time, and a gastro bug could land him straight into hospital on a specialised drip.  Xavier has been in and out of hospital 12 times since he was born.
      
“I got the phone call no mother wants ‘could you please come back to the hospital as there has been a positive test to MCAD on the heel prick test’.  My heart just broke that much more as I’ve been down this road so many times before”.

Amelia is five now and has been attending Prep this year. She is growing and healthy, and off all her preventative medications. She still has some trouble with asthma from time to time but is doing really well.

Thomas is in kindy now and loves to play soccer.  He also loves to dance.  “I’m positive he thinks he’s the 5th Wiggle!” says Kylie.

Little Xavier is almost two. He is doing great, a bubbly, happy kid, but still has many health problems. His last admission was in June, when all three kids had gastro.  His asthma is being handled now due to being on a preventer, so he hasn’t been admitted to hospital for over four months.

“It’s hard work, tiring and exhausting, and has been part of my life for the best part of 5 years, but ask me if I’d change anything and the answer would be a definite no!”

Amelia, Thomas and Xavier are this year’s faces of the Coles Care for Kids Appeal.  From 31st October to 27th November, all Coles stores in Queensland will be working hard to raise dollars for sick kids. 

You can help work wonders in sick kids at all Queensland Coles by buying a Care for Kids Christmas raffle ticket or a pack of eight Christmas cards.
 

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