The Great Ocean Road Coast Committee is entering a team in the Great Ocean Road Run Fest in May. Our dedicated staff and committee members will compete in the 6km and 14km races to help raise money for Challenge – an organisation that supports children and families with cancer.
We are very proud to support Challenge, who helped our great friend and colleague, Education Leader Hilary Bouma and her family in their hours of need.
Hilary’s youngest son, Joshua was diagnosed with Severe Aplastic Anaemia in 2014, just days after his 11th birthday.
Josh noticed some tiny red spots on his legs and had a persistent cold. He was taken to the doctor and it was discovered that he had little hemorrhages under his skin and that his blood platelets were incredibly low, a mere 16 compared to the normal 500.
Josh was then placed on a waiting list for four months before he was able to get a bone marrow donor from ‘Bone Marrow Donors Worldwide’ – an anonymous donor from. During this time he was having blood and platelet transfusions approx every second day and was very susceptible to infection.
Before Josh’s body could accept the bone marrow donation, he had to undergo intensive chemotherapy to wipe out his immune system to give his body the best chance of accepting the new bone marrow.
Due to come home at Christmas 2014, Josh experienced complications from the transplant and started bleeding behind his eyes.
“He became really sick again and. Unfortunately one of the very rare side effects of having a Bone Marrow Transplant is developing post-transplant lymphoproliferative disorder, which is essentially lymphoma cancer,” Hilary said.
Bleeding behind Josh’s eyes caused him to become blind while he was battling the post transplant cancer. After 8 months, and a surgery to reattach his retinas, Josh has now regained some vision in his right eye, but has no vision in the left eye.
During this ordeal, Challenge offered Hilary and her family support, especially during the isolation phase of Josh’s treatment.
“Challenge was brilliant. They would offer iPads, DVDs, and other treats to help make the kids and parents more comfortable during this difficult time. They even gave Josh an iPod for Christmas!
“It was tough, because we weren’t really able to leave Josh and it was a stressful time for all of us and Challenge really went above and beyond to make sure we were comfortable in the circumstances,” Hilary said.
Challenge also provided Josh with surprise celebrity visits (when he was well enough) to keep his spirits up and provide inspiration: like meeting Jimmy Bartel and Andy Lee.
Challenge provided the parents with massage ‘time outs’ where they would collect the parents from the hospital and drive them to their beautiful treatment room in North Melbourne for a little massage and counselling.
“They look after you forever too. With ongoing support including weekends away for the patients, parents and siblings, Challenge is practical and helps families cope with the situation.”
Now in remission, Josh is enjoying relearning skills including surfing, skateboarding and bikeriding, with a vision impairment. He is grateful for life and living it up as much as possible.
“Challenge, along with other organisations were instrumental in providing support and assistance to the whole family to help us through the horrible ordeal.
“We are so grateful to everyone who has helped us over the years and look forward to what the future holds,” Hilary said.
The Great Ocean Road Coast Committee has entered a team in the upcoming Great Ocean Road Run Fest to help raise funds for Challenge who have helped Josh through his battle.
To donate, visit the Challenge website directly or donate through our team using the Great Ocean Road Run Fest fundraiser page. Donations of any kind are greatly appreciated towards this fantastic cause.