Ryder will lead Coast walk to fight infant death
This Sunday, Nine-year-old Childhood Heart Disease (CHD) survivor Ryder Worth will lead HeartKid Queensland's annual Two Feet and a Heartbeat charity walk.
Ryder is the official 2016 Sunshine Coast ambassador for the event which will held at Buhk Family Park.
Ryder was five days old when he was emergency air lifted to a Brisbane Hospital from Cairns, where he spent the first few months of his life undergoing numerous heart operations.
He was born with a number of heart defects including Transposition of the Great Arteries, multiple holes in his heart and only has half a functioning heart.
When Ryder was one year old he underwent a major open-heart surgery called the Glenn Procedure. The last major surgery Ryder had was when he was 6 years old.
Ryder's mum Caroline said you can never prepare yourself as a parent to hear such devastating news about your child and what they will have to endure.
"Having a heart child can be very traumatic and emotional however I would not have changed Ryder for the world. Ryder has continually showed strength, courage and determination," Caroline said.
"The Fontan Procedure was the toughest, with a long time in hospital as Ryder's drains would continually fill with fluid. We thought we would never get to go home.
"All the nurses and doctors fell in love with Ryder with his big blue sparkly eyes, red hair and huge smile. Ryder loves his school and friends, he swims, surfs, runs, and always puts a smile on everyone's face.
"HeartKids was a great support for me and my family, offering meals and conversation through some very difficult, emotional and challenging times. As a young family with another son Saxon (Ryder's older brother), it can put a lot of stress and strain on the family."
HeartKids Queensland CEO Holly Williams said Ryder's story is far too common and the walk will raise awareness and much needed funds for heart kids, their families and medical research.
"Eight babies are born with heart disease in Australia every day. Heart disease is Australia's leading cause of infant death. There is no known cause or cure," she said
"Sadly four precious lives are lost each week. For families living with childhood heart disease their journey is lifelong, once a heart kid always a heart kid."
"The walk is 2.1km long to symbolise when the human heart first starts to beat at 21 days after fertilization. The walk will be followed by a short ceremony to remember the Heart Angles who have lost there lives to Childhood Heart Disease, plus a BBQ and family activities."
The event is being held in 9 locations across Queensland. To register visit www.twofeetandaheartbeat.org.au
The Sunshine Coast Two Feet and a Heartbeat event is proudly supported by the Sunshine Coast Council and Arrow Energy.
About Childhood Heart Disease: In Australia, eight babies are born with Childhood Heart Disease (CHD) every day.
CHD is the leading cause of death for children under one. 4 precious lives are lost each week. There is no known cause or cure.
CHD takes more lives than all other childhood diseases combined. CHD encompasses a range of congenital and acquired heart conditions.
About heart kids and their families
Many heart kids require multiple surgeries, have a weak immune system and are on constant medication.
The only Paediatric heart transplant unit in Australia is at The Royal Children's Hospital, Melbourne. It is not uncommon for heart kids to spend months and even years in hospital recovering from their surgeries.
Many families temporarily move away from home to be close to their heart kids during surgeries. For the first time in our history there are more people over the age of 16 with CHD than younger.
This is due to medical advances. In days gone by they were the 'blue babies', most of whom died at birth.
About HeartKids Queensland: HeartKids Queensland is a not for profit charity.
We provide support for life saving medical research and services designed to support heart kids and their families through their life long journey with CHD. Services include:
• Peer to peer emotional support
• Emergency travel, accommodation and meals
• Respite and recreational programs such as family, tween and teen camps
• Teen transition services
• Family Support Coordinator attendance at all regional clinics
• Telephone support services
• Supply of medical equipment
• Bereavement support programs