The parents of a Dunedin boy who has a rare heart condition have drawn support from around the globe.
Among that support has been help from Heart Kids, an organisation that supports 2800 children in New Zealand and receives no government funding. August is Heart Kids Awareness Month.
Alex Zani (3) was diagnosed with a vascular ring that was constricting his windpipe and food pipe at 19 months old.
This condition makes up only 1% of all congenital heart defects, which is why they are often missed.
Alex was having trouble breathing and sleeping, and vomiting up to eight times a day.
Dunedin Hospital had little experience with Alex's rare condition, which is only diagnosed an average of four times a year in New Zealand.
He was sent to Starship Hospital in Auckland to fix his heart defect when he was 21 months old. Every week, 12 babies are born with a heart defect in New Zealand.
''For a while, our lives were consumed by his illness,'' Alex's mother, Alison Zani, said.
Mrs Zani works as a speech therapist at Dunedin Hospital. After seeing a poster at Savemart, she got in touch with Heart Kids two days after Alex was first diagnosed, and said their support and guidance through the complex medical system was invaluable.
''Felicity [Sutherland] gave us really good advice about how to navigate the hospital system and ask for a second opinion,'' Mrs Zani said.
''She also offered counselling in our home and brought muffins around every single time she came over.''
When the family were staying at Starship Hospital in Auckland during Alex's surgery, a surprise package of essentials arrived from Heart Kids to make the family's time in hospital a little easier.
The Zani family are English and have no family in New Zealand, so the hamper of teabags, Berocca, coffee mugs and chocolate was welcome.
Mrs Zani attends regular Heart Kids coffee meetings with other Heart Kids families. Justin Zani, Alex's father, said he would like to get one going for men as well.
Heart Kids regional family support co-ordinator Felicity Sutherland said it was a ''privilege'' to work with the Zani family.
She saw her role as ''informing and empowering'' Heart Kids families.
'' I will support these kids and their families for as long as they want or need me; heart kids are always heart kids,'' she said.
Alex is now a happy and thriving little boy, and his parents hope their Facebook support group of almost 300 members will give courage and information to the hundreds of families afflicted by this unique condition worldwide.
Mr and Mrs Zani feel they have become ''experts'' in the condition because of their first-hand experience and the lack of general knowledge available - even among health professionals.
''There are many times you have to say `this isn't good enough' - and I am really grateful that my husband and I were in a position to do that,'' Mrs Zani said.
By Elenor Ainge Roy
