Heartwarming stories from Heart Camp
When heart mum, Jo Maheno, witnessed an exchange between her 9 year old daughter Arielle and another little heart child, she was almost brought to tears. But they were tears of happiness.
Arielle and her new friend were at their first ever Heart Kids Camp and had an amazing revelation…. they both wore the same battle scars – an 8cm scar down the middle of their chest. It was in that moment Jo knew the next week would be another defining moment in her daughter’s life.
When Jo was just 20 weeks pregnant she was given the news every parent fears. The Invercargill mother of three was told that her fourth child had a serious heart condition and she would need immediate heart surgery.
Within days of being born baby Arielle was to undergo the first of three major surgeries to correct her hypoplastic right heart. Hypoplastic right heart syndrome is a congenital heart defect in which the right atrium and right ventricle are underdeveloped. The defect causes inadequate blood flow to the lungs.
It’s hard enough to be away from home with a sick child at the best of times… but for the Maheno family having to travel from Invercargill to the other end of the country, leaving behind their three other children, made it a logistical and emotional nightmare.
By the time Arielle turned two, it was a trip the Maheno’s had made nine times.
Looking at little Arielle now, you could never tell she was born with a CHD. “Nothing limits her,” says Jo, “she knows her own limits, and she never lets her heart condition get in the way of anything. She dances and is involved in a huge range of activities… there’s simply no stopping her,” her mum laughs.
In January, Arielle was selected for her first Heart Camp. The annual camp is one of the key services Heart Kids provides and is open to heart children from aged 8 – 17yrs.
“What is so amazing about being at camp is the connection these children have. They all have something in common and it makes them feel really special,” explains Jo, who volunteered as a camp helper.
“As a mum of a heart child, helping other children with heart defects, looking after and caring for them has been incredibly rewarding. They’re all so special.” Jo says it’s also been amazing to reconnect with a lot of other parents and hospital staff at camp.
Jo says Arielle spent every other day studying the camp manual before she left, and now that they’re back home, she has already started talking about returning next year. “It has been the most amazing experience for her, giving her confidence and the chance to meet other children just like her. She has made friends for life. These guys are warriors, and an inspiration to everyone”.
Jo is back into normal life in Invercargill now, planning the next Heart Kids event. Being on the Southland committee gives her the chance to give back and help other heart families. “The Invercargill committee has been going for 9 years and is made up incredible dads, mums and grandparents. “For me it is such a privilege to help other families and also give them some hot tips and information you often can’t find in a manual, or from a website.”
“We just want heart families to know we are here for them, we don’t want anything in return.”