Teenager with childhood heart disease breaks international sports record
Holly was born with tricuspid atresia, transposition of the greater arteries, a ventricle septal defect and double outlet left ventricle. She would undergo three surgeries – the first at two weeks old – finishing with a Fontan at eight years of age. Her parents knew that if she got through preschool years she would have a 75% chance of having a fairly normal life.
Holly crawled and walked normally until at four years of age she developed spasticity in her legs. When five years old exploratory surgery confirmed that her spinal cord finished one vertebrae lower than ours. As she grew it tethered like a tight elastic band, pulling on and damaging the nerves of her lower legs. Surgery minimised a lot of the spastic reflexes but not all the damage could be undone.
As Holly approached her eighth birthday her oxygen saturation levels started to fall. She was very tired. It was time for her Fontan procedure. Her remarkable recovery saw her discharged after only eight days, despite lymphatic complications.
Holly’s parents said they never really knew if it was her legs or her heart that was tiring her out so much but it became clear that it was her heart.
“Holly’s love of sport –basketball, soccer and water sports –became evident after her Fontan procedure and kept growing but, with her disabilities, she struggled to find teams that she could join,” said Holly’s mum Leonie.
“We spoke to the Disability Clinic at The Children’s Hospital at Westmead who suggested getting her classified for swimming and athletics so she could compete with other disabled athletes. This was great for Holly but childhood heart disease (CHD) wasn’t recognised so she was only classified for the spasticity in her legs,” Leonie said.
In 2012, the competitions at state and school levels began and it was soon evident that Athletics suited Holly best. She started training with past Olympic champion Jane Jamieson.
Holly’s legs had improved so she was reclassified for athletics. There was still no classification for CHD. “Holly was really disappointed as she wanted other ‘heartkids’ to compete in sport like her,” said Leonie.
In 2014 this amazingly focussed and determined young woman won The Kate Bailey Award for the most outstanding sportsperson with a disability. In 2015 Holly broke new records in five events, came first in all her events at the Combined Independent Schools’ competition and was celebrated as para athlete of the season.
In 2016 after joining Cherrybrook Athletics Club as part of Athletics NSW, Holly went on to achieve medals in all her events at either a school level or an Athletics NSW/National level.
Earlier this year Holly gained an ‘International Classification’ so she could compete overseas. At the SummerofAths Grand Prix in Canberra in March, Holly broke the T35 long jump world record by 37cm.
Not a bad achievement for someone born with half a heart.
Holly is a symbol of hope for all parents of children born with congenital heart disease and an inspiration for other “heartkids” who like her are actively working to prove what is possible. She is determined to see childhood heart disease recognised and appropriately classified within the realm of disability and sports.