Help for James' New Heart

Phyo and Jon are a typical hard working family raising their 3 beautiful children Lacey 5, James 3 and Jake, 2. Three weeks ago James was unwell and taken to hospital for a check up and what happened from there is unimaginable for any parent. While James was in hospital getting tests he suddenly went into heart failure (only working at 5%), he was placed on full life support and flown from their home in Canberra to Sydney Children’s Hospital. No one knew what had caused it and whether or not he could pull through this. Phyo and Jon’s 2 other children stayed in Canberra with family (never having left them before) while they flew to Sydney to be with their incredibly tough little boy, meanwhile he suffered 2 cardiac arrests and spent 2 weeks not knowing what was causing his heart to fail. James has now been diagnosed with a rare condition called Barth Syndrome which affects the heart and immune system. He has now been flown to Royal Melbourne Children’s Hospital along with Phyo where they will wait for up to 18 months for a heart transplant and his medical care post this. Phyo, Lacey and Jake will now have to relocate to Melbourne to be with James leaving behind their friends, family and support network. Unfortunately Jon will need to remain in Canberra (travelling to Melbourne at every chance) to continue working to cover medical costs, everyday bills, their mortgage and save for James future care needs. It is a long road ahead emotionally, physically and financially but their family remain positive that they will get through this and James will again play with his sister and brother. Phyo has given so much support to others in the community in both Sydney’s St George area and Sutherland Shire as well as Canberra, having been a social worker for many years; it would be nice to in turn support her and her family through this unimaginable time. Any support is appreciated whether monetary, raising awareness of Barth syndrome or keeping them in your thoughts and prayers for this long journey ahead.