Bannockburn nine-year-old Xavier Simpson refuses to let a rare syndrome stop him from “doing his thing” raising thousands of dollars in Jump Rope for Heart.
The determined youngster has skipped for almost six hours so far, raising $1584 for the annual Heart Foundation fundraiser, on top of $700 in his first attempt in 2019.
“I can raise money for people like me and have lots of fun,” he said.
Xavier was born premature and developed groin hernias at three months old and again at six months.
“A few years later, when they were putting the bits and pieces together, they figured out he had Ehlers-Danlos Syndrome (EDS),” said mother Alicia Simpson.
The rare inherited condition, which Xavier has had since birth, affects the body’s connective tissues, which are responsible for supporting skin, blood vessels, bones and organs.
Some people with EDS, including Xavier, also have heart defects.
In 2019 specialists discovered a defect preventing his aortic valve from properly controlling the flow of oxygen-rich blood to his body.
This means Xavier is prone to fatigue and breathlessness.
“School announced they were doing [Jump Rope for Heart] about a week after he got diagnosed with his heart defect,” Alicia said.
“It was actually a good way for us to sit down and talk to him about it.”
Xavier took up the challenge and was the highest individual fundraiser at his school, Bannockburn P-12 College.
“He’s particularly motivated and excited by Jump Rope for Heart, which he sees as his thing because he has a heart condition,” Alicia said.
And he has no plans to stop, despite the possibility he might need surgery to repair the valve when he is older.
“I would say I’d never stop,” he said.
“It makes me feel proud and confident.”
Xavier’s six-year-old brother Harrison has joined him in Jump Rope for Heart, and both Alicia and his dad Brenton skipped in the program when they were in primary school.
“I never imagined that I’d have such a personal connection to the program all these years later,” Alicia said.
“It’s amazing that something I did as a child, and that so many other Australian kids have done, is funding research that could help my own son.”
But Alicia’s skills have diminished a bit, as she managed just 12 skips in a row on Monday morning, compared to Xavier’s 28 and Harrison’s 21.
“So mummy lost,” she laughed.
“Skipping’s really hard when you haven’t done it for 20 or so years.”
Xavier cannot play contact sport due to a high risk of organ rupture but loves competing in tennis and athletics.
“I wouldn’t be able to pick [my favourite] because they’re all fun,” he said.
He even ran a 300-metre sprint at school with “nanny” and “poppy” stationed on the course to look out for him.
He came fifth before collapsing into his dad’s arms.
“There was no way he was going to sit out any of the activities,” Alicia said.
“In the meantime, he’s being monitored closely by his doctors. Despite his health challenges, he’s a very positive and determined little boy.”
Bannockburn P-12 College students had skipped 136 hours and raised $8840 in total as of this Monday.
Details: jumprope.org.au
