The little battler who is full of beans!
2 year old Jackson Ryder is a blue-eyed redhead who is full of mischief and lives life at 100 miles an hour. If you look at him you would never know he had a life threatening heart defect. Jackson has already had two major heart surgeries and is waiting for his third. The tell-tale signs are all there; the blue fingernails, shortness of breath, sweaty.
Born with Hyperplastic Left Heart Syndrome little Jackson has a heart that is a ticking timebomb. Mum, Krystal says he needs another operation but the specialists are still deciding when the best time to do it, is.
“As far as I’m concerned,” explains Krystal, “the sooner the better. However they want him to recover a bit more before doing another open heart procedure. But on the other side they want to catch it before it becomes critical.”
Little Jackson spent the first four and a half months of his life in hospital. Krystal says the daily visits by Diane and Katya from Heart Kids made such a difference.
“They’re in a unique position, they’re able to have a connection with us while understanding everything we are going through. Unlike the doctors and nurses who have to keep it professional and not get too close.”
And that support has continued at home. “When you leave hospital it can be really scary. Suddenly you’re totally in charge of your baby, without the support staff around you. Having Heart Kids there, a phone call away, a text, or a visit just makes the world of difference.”
Jackson can’t go to day care or kindy for fear of picking up bugs and infections, so it’s very isolating for Krystal. Visits from family support workers Montee and Leanne really help, along with the special Murmurs coffee groups.
“As hard as our family try, no one really understands what you’re going through, and frankly I wouldn’t want them to. So to have other parents to talk to is just incredible.
“I've always felt like Heart Kids has been a cornerstone in the village that it takes to raise Jackson, I can’t imagine doing this without having them on our side.”