Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
I am Mum to 3 including Matthew – my SWAN – who passed away in 2019 after a 4 and half year journey to be diagnosed with a condition called HDAC2. He was one of 3 in the world when he was diagnosed. Today I am a life coach with a laser focus on how caring for ourselves increases our capacity to care for those around to us. Lessons I learnt in the midst of caring for Matthew. I am also a VIP Driver in the Army Reserve. To the CAG I bring my experience of caring for a child with a not just rare but very medically complex condition.
I have two SWAN children aged 19 and 16 years old and an older child who is 21 years old. I have a fantastic support worker who has a great relationship with my SWAN kids. There are other members of my family who also need extra support, although they are not ‘special needs’ umbrella or are supported by NDIS. I juggle caring with; part-time work (I teach plant sciences at the University of Melbourne), part time study (Masters of Teaching at La Trobe University), running a house and trying to take care of myself. My ‘dream list’ includes; to do more walking, more painting, more socialising and less of everything.
I have three amazing children (4,3 & almost 2) with my husband Kieran, two of whom have a super rare genetic condition with a myriad of symptoms. Life certainly hasn’t turned out how I expected, but at this stage of our journey as a family it feels like a privilege to be part of the world of disability. Photo is with my son Teddy.
My Name is Maya, I’m a young Mum to two beautiful little kids. My 4 year old Lloyd has a rare genetic syndrome and this is what led to me finding SWAN. SWAN gave our little family the opportunity to connect with other families and now the opportunity to advocate for other families like ours.
Living in an unknown world with an unforeseeable future towards our children’s lives is something no parent should have to endure, and with round 2 of uncertainty is something I wouldn’t wish on my worst enemy. Meisha is my daughter who has a rare Brat 1 gene, with the mutation unknown. Her life expectancy was 2 and she beat the odds and is now coming up to her 11th birthday. My son also had the Brat 1 gene, however sadly he passed away in 2005 at 15 months of age. Life is what we make it, dance, sing and be yourself, because time is limited and our loved ones are precious and valuable more than any riches on earth. Photo is of my girl Meishy.
My name is Alice and I am the mother to 3 girls, the eldest of whom was diagnosed with KAT6A syndrome in 2021, after a long period of uncertainty and searching for answers. I am also a General Practitioner whose special interest is looking after women in the perinatal period (preconception, during pregnancy and postpartum) and their children. In this role I am able to support other families also walking the ‘rare disease’ path and counsels couples about genetic testing in the preconception period.