Two mothers have launched a foundation with Telethon to fund research into extremely rare childhood diseases.
Instead of kicking the footy like his pals, nine-year-old Perth boy Conor Brown‘s extracurricular activities involve weekly injections and multiple medical appointments. And, while his friends gorge on cake or fish and chips, he’s on a strict limit of 10 grams of fat a day – and his life depends on it.
Conor has lymphangiectasia – his lymph system did not form properly, resulting in a build-up of excess fluid that seeps into the tissues. It’s rare. So rare he is the only person diagnosed with it in Australia. And there’s no cure.
When he received the diagnosis at just four months old, his mother, Samantha Brown, was in shock. “When the doctors came in and told us, my husband and I stared at each other, and said, ‘We don’t even know what that is’. The information isn’t out there, you’ve got no one who understands.”
But when Samantha met Aydee Edwards at a Telethon event, she found someone who recognised her struggles all too well. Aydee’s eight-year-old daughter, Sophie, has juvenile arthritis and avascular necrosis – her bones are slowly crumbling. The little girl, who is terrified of needles, needs fortnightly injections, three-monthly infusions, and six-monthly MRI scans. Some days, she struggles to walk and requires a custom-made wheelchair. Again, there is currently no cure.
This year, Samantha and Aydee founded Hope Warriors to fund research into extremely rare childhood diseases. Working with Telethon, they hope to set up a rare disease research facility in WA, but perhaps more importantly they’re focused on building connections for those who need them.
“It can be a tough road,” says Samantha. “Aydee and I are keen on developing strong support networks so other children and parents don’t feel quite so isolated.”
See hopewarriors.com.au for details.