Mum in battle to save son, 14
A MOTHER of four is pleading with the community for help after learning hundreds of thousands of dollars stand in the way of lifesaving auto- immune disease treatment for her teenage son.
Condon’s Ann Sue has started a MyCause fundraising page after learning the only hope for her eldest son Kris McGowan, 14, is in the US, with costs estimated to exceed $ 500,000.
With no other treatment available in Australia for Kris, Ms Sue said he was starting to get to the point where he wanted to give up. “We don’t want him to die,” she said. Kris was diagnosed a year ago with the extremely rare auto- immune brain disease, which only affects 16 other children around the world.
Kris’s diagnosis saw invasive treatment begin, with frequent trips to Brisbane, life- threatening reactions and blood transfusions. None of it has worked. He now relies on 27 tablets a day and 24- hour care from his mother to monitor his wellbeing and safety.
Kris also suffers severe seizures and has been assessed as having a below average ability to learn, recall and recognise verbal information and also well below average verbal working memory, with the cognitive capacity of a child aged four to six.
Due to deterioration in the cortex of his brain, Kris also suffers from moments of psychotic behaviours and, at times, gross motor dysfunction requiring the use of a wheelchair.
Ms Sue said Kris was now a totally different person, having gone from funloving and always happy to now being angry most of the time.
“Part of the brain that’s damaged is his behavioural area of the brain, so he doesn’t like being around people at all,” she said.
A surgeon from Kris’s medical team has discovered new stem cell treatments being trialled in the US in the hope of providing better life outcomes for autoimmune disease sufferers.
While the treatment and the trip are very costly, Ms Sue said it was essential to Kris’s future and the family had decided to start the MyCause campaign.
“It’s phenomenal, the amount it costs to stay over there,” Ms Sue said
Due to the rarity of Kris’s condition, Ms Sue said there was no indication as to how long the family would have to remain in the US.
“This is about giving him a chance at life,” she said.
If Kris undergoes the treatment in the US, he will have the potential to live a fun and perhaps normal life. To find out about the campaign, visit mycause. com. au/ kris