Ivana is Felix's mum.
Felix is the youngest person in Australia to be diagnosed with Myhre Syndrome. After being born with a congenital heart condition, Tetralogy of Fallot and small lung arteries, health professionals also tested him for genetic conditions.
He was diagnosed at two months old. The diagnosis was difficult to receive. Myhre can affect many body systems and issues are progressive, with complications being life limiting.
It is Ivana's hope that starting a foundation in Australia will raise much needed awareness, funds and partnerships with researchers and clinicians to find a cure. She believes it is well within reach as technologies and therapeutics are becoming more advanced at a more rapid rate than ever before. Ivana's wish is for Felix's trajectory to be one of no progression of symptoms and diagnosis, and to be able to live a happy, productive and pain free life. While there are only 13 people diagnosed with Myhre in Australia, the numbers will be increasing with greater access to genetic testing.