Despite his challenges, Cody continued going to school, with full-time teacher aids supporting him. “He loved it,” says Jo Heslop. “It wasn’t until 2018 that Cody could no longer go on the bus – he had really loved the bus but was unable to get up the steps. From this point on we took Cody to school.”

They stopped treatment with Genistein in 2017, as they no longer saw any signs it was working. “We are grateful for the Genistein as we are sure it worked for a while holding the symptoms of Sanfilippo.” The Heslops made sure Cody could enjoy the things he loved. “We bought Cody a side-by-side vehicle so he could continue to go out on the farm with Dad, his brother Jake and the dogs,” she says. “Cody enjoyed Dora and Mickey Mouse on TV, balloons and balls were among his favourites, too.” Inspired by Cody’s experience, Heslop had also written a book, It’s Ok! , about accepting others for who they are. Heslop too was battling her own challenges, having been diagnosed with breast cancer in 2014. “I had a mastectomy followed by six rounds of chemo and five weeks of radiation,” she says. “I found that by setting daily goals and not looking too far ahead were the easiest ways to get through. I made my boys school lunches every day no matter what. I was very lucky to have my husband Ben – my rock – he had a full-time job managing the farm while helping me and our boys every day.”

In early 2021, Sanfilippo took hold and by June, Cody was unable to go to school. “Our beautiful boy fought hard. We kept Cody at home with us nursing and managing his care ourselves with the support of hospice, our local doctor and the wonderful district nurses – we also had wonderful friends and community surroundin­g us.” On 26 September 2021, at the age of 19, Cody passed away. “In the 2014 article I wrote ‘I never walk past Cody without touching him’ – oh how I miss that touch. Cody will always be remembered because ‘there are some who bring a light so great into the world that even after they are gone the light remains’.”

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