By DANIELLE GALVIN
MESSAGES of hope and strength are giving Jade Kollmorgen the boost she needs.
The 15-year-old’s mum Rachel started up a Facebook page “a wall of endurance and hope” to help support her daughter in her day-to-day life with cystic fibrosis.
Time in hospital, away from friends, school life and everything a teenage girl likes to do hasn’t been easy for the Pakenham Secondary College student.
That’s why her friends and close work mates and family friends have posted on the wall.
“You are such an amazing, strong, independent, beautiful and persistent girl, all our prayers and thoughts are with you, all our support and love will be with you to help endure it all,” one friend posted.
In recent weeks, Jade has spent time in hospital being treated for a rare environmental bacteria or bug that has taken hold.
Rachel said it can be frustrating because CF kids can “look fine on the outside” but Jade was hooked up to a 24-hour intravenous drip and it had been a tough few weeks.
“The long-term IV is called a PICC line and runs up her arm and shoulder, around her neck and down into the large vein in her heart,” Rachel said.
“On Hospital In The Home (HITH), she is still considered a full in-patient of the Royal Children’s Hospital, but HITH allows her to go to school and try to lead a relatively normal life – she has to wear the Baxter pump 24/7, showering, sleeping and so on.”
For Jade, she says it’s “annoying to carry around the pump” but she’s getting used to it and she has been encouraged and over-whelmed by the posts on her page.
When she was diagnosed as a baby, the Pakenham mum had little knowledge about CF and what it would mean for her first-born.
“It’s one of those things I’d never heard of it and I didn’t have a clue what it was,” Rachel said.
“It’s quite a complicated illness and it does affect them physically it’s very different to other illnesses.”
In the latest fight for those with the condition, there is an ongoing campaign to bring the Kalydeco drug to Australia for those with CF.
It is the first of a new life-saving medication, dubbed the magic blue pill.
There are currently 200 Australians with CF fighting for access to this life-saving drug.
Kalydeco costs just over $300,000, and this is one of the main reasons behind the approval delay.
“Every CF person has copies of a particular gene and 80 per cent of them carry the most common gene which is what Jade carries,” Rachel said.
“This drug has been in worldwide trials for a few years now and it’s been shown to be helpful to ones with the particular copies of the gene.
“We are three years behind, there’s a real fight going on – they are calling it the magic blue pill because it takes away half their medications.”
Rachel said with the possibility of the magic pill she had allowed herself to have a bit of hope for her daughter’s condition.
Plans for a trip to the Ronald McDonald Holiday House Retreat have been put on hold while Jade recovers from the bug.
Visit “Jade’s Wall of Endurance and Hope” on Facebook to leave a message of support.
