By KATH GANNAWAY——–
AT JUST three-and-a-half years, Jaylen Cornish had endured 19 operations and spent a mere four months out of hospital.
Coming home is a milestone for the little boy with a cheeky grin and a brave zest for life, and for his Yarra Junction family.
Jaylen touched the hearts of Mail readers and the Yarra Junction community back in 2011 when his young mum Katie Cornish and grandparents, Christine Young and Wayne Cornish, reached out to raise money to help with his treatment and care.
The family wanted to thank the community and show how, with their support, Jaylen and Katie are getting on with life.
“What our community did in getting together to fund-raise for Jaylen was wonderful,” Katie said.
“I am amazed and so thankful for the small community we live in that they have done so much for us,” she said.
Jaylen was born with his stomach on the outside of his body, a birth defect called gastroschisis, a rare condition that was revealed early in the pregnancy.
Visiting her parents in Yarra Junction, Katie said their biggest achievements are that Jaylen is out in the outside world trying to function as other kids his age do, and that he is starting to eat orally.
Katie has undergone extensive training to enable Jaylen to be cared for at home which is close to Monash Medical Centre.
A room has been set up for the machines that keep him alive.
Up until recently, Jaylen’s only way of feeding has been through a stoma which takes the food replacement (Total Parenteral Nutrition – TPN) directly into a main artery to the heart.
It’s an intensive procedure that has him connected four times a week to three different machines in a strictly controlled sterile environment.
Now he is starting to ‘eat’.
And, he’s going to three-year-old kinder. Next year they hope to get a nurse to be with him as he goes on to full-time kinder.
Infection is a constant threat, but Katie said they managed it and it was part of being out in the world.
They are realistic about the threats, and his future.
“It’s very risky for him to be out in the community without someone who is trained in his care,” Katie said.
“The TPN is keeping him alive, but down the track it will shut down organs and he will need transplants, so he doesn’t have a high life expectancy.
“We don’t think about what’s ahead. We think about how much time we have to try to raise awareness and look for answers … anything that will help him along the way.
“We will keep fighting to look for a cure and in the meantime we are enjoying the time we have with him and living every day as it comes to give him the best life possible.”
As a young, single mum, life for Katie is a huge challenge, and she admits, that despite the great support she has from her parents, and the generous support of the Yarra Junction community and others, life can be lonely.
She plays netball at Yarra Junction and basketball down the line, closer to where home now has to be.
Jaylen’s strength, and love, is her inspiration.
“Some people ask how I do it … and others say “she has to do it,” she says.
“But I don’t have to do it. I could have walked away, but I chose that my son is number one in my life and I will give him the best life possible.”
The adoring look from those trusting, big blue eyes, as his mum attends to the ritual of cleaning the life-giving equipment which is part of his still quite small body, is reward enough.
