@Normal:Jaylen’s friend Sage, who had a mild form of gastroschisis, and mum Angie drove up from Warragul to help Jaylen celebrate.
By Mara Pattison-Sowden
WHILE family and friends gathered to celebrate Jaylen Betka Cornish’s first birthday on Sunday, they were all well aware his milestone also meant those 365 days had been spent in hospital.
This little warrior isn’t just getting support from his family and friends in Yarra Junction, though.
Since the Mail first spoke to mum Katie Cornish (Littlest Warrior, 2 August), his Facebook page has been passed around 20,000 people worldwide, with almost 9000 “attending” Jaylen’s fight for home.
Katie said it was amazing to have so many people supporting Jaylen on Facebook.
“I know I have so much support here, but we have people from Western Australia, Queensland and even Japan…to know my boy has so much support and know they are trying to help him, it’s lovely really.”
Jaylen was born with a severe case of gastroschisis on 1 December 2010, battling through a rough journey of infections and viruses.
He has been through four operations that have not succeeded and his little tummy still doesn’t work properly.
The birthday celebrations were all too much for Jaylen on Sunday though, who decided to snooze during his party, blissfully unaware of the love and support he is getting.
Katie has been fighting hard to get her little one home from hospital but she says the next step is all up to Jaylen.
“It’s not up to anyone else but him, which makes things hard after he’s been through so much,” she said.
“Our biggest wish is to have him home for Christmas and healthy.
“He’s definitely come a long way, and he’s getting heavy now.”
Jaylen is fed by a tube that enters his stomach, and he also has a central TPN (total parenteral nutrition) line that goes into his heart when he can’t be fed by any other means.
“If he doesn’t start tolerating his feeds by February, we have to transfer him to the Royal Children’s Hospital, until then we’re seeing if he can tolerate more feeds,” said Katie.
“Now he’s older doctors are hoping within a year or two that his stomach will grow and hopefully tolerate the feeds through the peg, but he needs to reach 50mls an hour to be able to come home several nights a week.” Going to the Royal Children’s Hospital would mean a month’s training for Katie to learn how to use and clean Jaylen’s TPN line, as well as selling up the family home and having to move closer to the hospital.
There are only 12 other children in Australia whose parents are trained to look after the TPN line in their own homes.
Katie is hoping they won’t have to take that option.
“They (doctors) are hoping to wean him off the TPN and give him more tube feeds, but we don’t really know where we’re going to head with it,” she said.
“If he stays at Monash, when we get him home it definitely won’t be full time to start off with, but we’re hoping to get him overnight for Christmas so we can give him a real Christmas morning.
“If anyone was to ask what I want most for Christmas – it would be to have my little man home for Christmas.”
