There are two coloured beads that help tell Aiden Hobbs story.
A blue bead represents SickKids hospital. A purple bead represents Crohn’s disease.
Hobbs was diagnosed earlier this year with the inflammatory bowel disease, and beads have become significant to him since then, like bread crumbs along a path.
Hobbs is a nine-year-old kid from Collingwood. He said he wasn’t feeling well for a while, and he went to Collingwood hospital, but his doctors couldn’t quite pin down a diagnosis. His mom, Crystal, said her son was losing weight rapidly (from 70 to 50 pounds in a couple of months) and his bloodwork showed abnormalities.
A pediatrician sent him to SickKids, where the Crohn’s diagnosis was confirmed.
Hobbs had 60 ulcers in his intestines and esophagus. He went through several tests and procedures while in hospital, and here’s where the beads come in.
“There were these things called bravery beads,” said Hobbs. “Everytime I had to have something painful they gave me a bead. When I got my scope, I got a lot of beads for that one.”
At home, Hobbs’ bravery beads hang in his room, where he can show them off.
One day at the hospital, Crystal said her son came up with an idea. He wanted to raise money for the SickKids Inflammatory Bowel Disease (IBD) Centre, and he was going to use beads to do it.
When Hobbs got home, he started his own fundraising campaign, with the backing of SickKids, making and selling bracelets. The bracelets are made by Hobbs – sometimes with help from his family – and each contains at least one bead. Purple for Crohns, and blue for SickKids. He’s selling them by donation, with all proceeds going to the SickKids IBD centre.
“I felt comfortable at SickKids,” said Hobbs. “I enjoyed how it wasn’t your every day, normal hospital. At SickKids, there was a bunch of things for kids ... I just really enjoyed the hospital, how it was nice, fun, and super cool, and I wanted to make it even more super cool and stuff like that.”
He particularly enjoyed a lounge on the fourth floor with all the video games he could want. But more than video games, Hobbs said all the people at SickKids helped him get through what he needed to.
“There were a bunch of volunteers I really liked that helped me and played with me,” said Hobbs. “My support worker, Jane, became one of my friends while I was there. Without her I bet it would have been way more scarier. She told me how to stay calm if something painful was going to happen.”
While he was there, Hobbs played BINGO on the SickKids TV station, and met a clown who asked him for advice on their first day. He said there were always a bunch of clowns around.
He stayed at SickKids for eight days, and mom, Crystal, stayed with him.
“They astonished me,” said Crystal. “They went above and beyond and made it so much easier .. they made you feel like you were their only patient.”
At home the support continued from the local community. People stopped by with food, offers to watch Hobbs’ two siblings while he was in hospital, and with gifts and visits for Hobbs when he returned from hospital.
Hobbs’ school, Cameron Street Public School, called him via FaceTime while he was in the hospital to say ‘hi’ and fill him in on lessons. He returned to school slowly and is back to full-time now.
When he got home, he was using a GI tube for feeding for a few weeks. He could ingest only clear liquids, and quite enjoyed the popsicle option.
He said the most difficult day was watching his family eat pizza.
He is now slowly re-integrating food back into his diet, and his medical team and family are watching for signs of irritation triggered by certain foods.
The dietician recommended lots of carbs, so he was allowed to start with pizza and burgers – two of his favourites.
His dietician also broke the rules a little to allow Hobbs to add broccoli to his food list – that’s his all-time favourite food.
“I just feel like there’s going to be a food I really like and I’m going to eat it once and then not be able to have it,” said Hobbs.
Crohn’s, at the moment, is a chronic disease with no cure. Hobbs’ medical team is focused on managing the disease and keeping Hobbs’ pain-free.
He receives weekly injections of a drug often used - in higher doses - in Leukemia cases. Doctors are hoping it will put Hobbs’ Crohn’s into remission. He also gets blood work done every two weeks.
In the future, Hobbs is hoping to have a career in robotics, or as a professional baseball player. He's just started playing baseball this year and loves playing third base.
Hobbs continues to work away on his bracelet campaign, and has made more than 100 to sell. His initial goal was $500, but he’s already surpassed it.
“My school was very supportive,” he said. “Normally you’re not allowed to sell stuff at school, but they were fine with it for me.”
Hobbs’ new goal for his bracelet campaign is to raise $700 for SickKids IBD centre.
"I am happy to do this and because of SickKids I am feeling better and I will continue to do what I love," said Hobbs, adding the campaign will keep going for as long as he feels like it.
His bracelets are for sale at Paula’s Pantry and Gifts in Collingwood or by contacting Crystal on Facebook. You can also donate to Hobbs’ campaign online here. Donations of $20 or more are eligible for a charitable tax receipt.
