While everyone else did 100 Skips a Day Challenge, Stacy and Angelo Buttigieg rallied their whole Perth community to honour the life of their little girl, Everleigh, and raise more than $14,000 to add to the $40,000 they have already raised for Children’s Medical Research Institute.
Everleigh lived with WOREE Syndrome and had daily seizures, profound global developmental delay and severe cognitive impairment. Most children with WOREE Syndrome do not live beyond four years old, and Everleigh died just before her third birthday.
Her parents, Stacy and Angelo, have participated in 100 Skips a Day Challenge for the last three years to fundraise for research.
“We started skipping to support much-needed research into childhood conditions,” Stacy said. “We also made a promise to Everleigh that we would keep advocating and raising money, with the hope that one day there will be a cure for childhood genetic conditions.”
As well as skipping, they held a BBQ and cake stall, and their local café, the Little Olive Leaf Café, donated $1 from every coffee sold.
“The skipping always feels a little bit challenging at the start of the month, but quickly it becomes just a part of our daily routine,” Stacy said. “And if you think that many children will never have the privilege of using their own legs to skip, skipping instantly feels like the easiest thing to do.
“We couldn’t be more grateful for the outpour of love and support we receive each year from Everleigh’s village. They continue to show up in more ways than one, hyping us up, supporting our family physically and mentally. Words don’t even brush the surface with the gratitude we have for our community.”