When Brandy Roy’s son was diagnosed with type 1 diabetes at just 15 months old during the COVID-19 pandemic, her world was turned upside down.
Isolated and unable to return to work, Roy described the experience as extremely isolating and overwhelming.
“There is very little support out there – financial, educational, emotional – for parents of babies and toddlers with type 1 diabetes (T1D) because of the rarity of the diagnosis,” she said.
“The average age of diagnosis is between four and 12 years of age. I couldn’t find any videos of babies getting their shots, support groups, books, or help getting access to life-saving equipment.
“It was also heartbreaking to learn about how many babies and toddlers are misdiagnosed, including my son, because not many doctors test for diabetes in children that young.”
As she learned to navigate her son’s diagnosis, Roy continued to search for support – but when that did not yield results, she decided to set out on her own.
Roy, who was born and raised in Elliot Lake and currently lives near Ottawa, created her own online community and wrote a children’s book called “Little Shots for Little Tots.”
She also started a petition to try to get life-saving equipment for babies and toddlers with T1D funded by the government and set up a GoFundMe campaign to help support her son.
Any excess funds raised through the campaign will be donated to NEO Kids in Sudbury, CHEO Hospital, and SickKids to help parents of newly diagnosed children purchase the equipment they need.
“The story kind of starts in February when I was coming off maternity leave. I was getting ready to go back to work when the COVID-19 pandemic struck in March,” said Roy. “Because of the pandemic, I was out of work. Then, two months later, Ryder got sick.”
Ryder, who is almost two years old, was initially misdiagnosed by his family physician when he started to present symptoms.
“The doctor checked his vitals, which were good at that point, and he said that he was concerned that Ryder was losing weight – dropped from the 75th percentile to the 3rd,” said Roy.
“But the doctor said it was probably teething, and Ryder also might have some constipation from too much Advil because of the teething. His suggestion was to go home and feed him more fruit and fibre, which is the worst thing you can give to a type 1 diabetic.”
After 24 hours, it was clear that Ryder wasn’t improving, so Roy took him to the emergency department. It was there they discovered what was really going on.
“It was scary. My husband wasn’t allowed into the hospital because of COVID-19, so he was at home and I was on the phone with him telling him what was happening,” she said.
“When I heard the diagnosis, I asked the doctor two questions. The first was, is it the bad kind (of diabetes)? The second thing was, can I give him my pancreas? Is there a way that we could switch, and I could become the diabetic?”
TD1, she learned, is an autoimmune disease where the immune system destroys insulin-producing cells in the pancreas, making it impossible for the body to regulate blood sugar levels.
People diagnosed with TD1 rely on insulin injections to survive.
While TD1 typically develops early on in life, only 0.1 per cent of children aged 1 to 4 were diagnosed with diabetes in Canada in 2013-2014.
In the months following Ryder’s diagnosis in May, Roy and her family experienced a lot of frustration, fear, and financial pressure.
Ryder’s blood sugar levels must be constantly monitored, and he receives around seven to 10 needles per day. Roy must also ensure that Ryder maintains a special diet.
On top of that, treating T1D in babies and toddlers is particularly challenging because they are often non-verbal and cannot move around independently.
“Kids that young can’t communicate with you yet – they can’t tell you when something is wrong or come and get you if they don’t feel well. They’ve also got so many other things going on that masks the diabetes, like teething,” said Roy.
“Children’s glucose levels can dip dangerously low at night when parents aren’t around to monitor them. The child could potentially lose consciousness, fall into a coma, or die as a result.”
As part of Ryder’s care, Roy uses a continuous glucose monitor (CGM) made by the company Dexcom, because it is the only device that can send parents alerts when glucose levels are too high or too low.
Without a CGM, Ryder would have to get up every three hours to monitor his blood sugar.
CGMs, however, cost about $300 per month or $100 per senor every 10 days.
“That’s one of the hardest things about this, the financial burden. Right now, I can’t work due to Ryder’s diagnosis and the COVID-19 pandemic. I used to be very independent and earned my own income,” she said.
“Now, I have to stay home with Ryder because it’s difficult to even find a daycare willing to provide care. I get $200 per month for Ryder’s special needs, and that doesn’t even cover the CGM, never mind other supplies like needles.”
Despite the challenges, Roy searched for a way to help channel her “negative energy” into something more positive and inspirational.
That’s why she launched a number of initiatives she hopes will celebrate and educate parents of babies and toddlers with T1D.
“I started an Instagram handle called @TD1Toddler this past July. Its purpose is to inspire and advocate, to be a place to share meal ideas and stories with other families going through the same thing,” she said.
She also started a smaller support group over WhatsApp for moms around the world who were looking for a like-minded community.
“Then, I wrote a book which is supposed to help educate toddlers, especially those who are newly diagnosed, and celebrate their hero parents.”
“Little Shots for Little Tots,” published by Academy Arts Press in 2021 and illustrated by Mandy Morreale, is meant to introduce the concept of diabetes to young children using simple words.
“The book welcomes a newly diagnosed toddler or baby and teaches them about what diabetes is and how to cultivate good habits like healthy eating,” she said.
“It also celebrates the parents because when you’re a T1D toddler or baby parent, you’re the one with diabetes. Yes, the kids go through it physically, but the parent is the one with the mental and emotional burden who is constantly monitoring, checking, taking away the pain, hurting them by puncturing them.
“The book really celebrates the parents and I think they need that recognition because they don’t get much help or support elsewhere.”
The proceeds from the book sales will be donated to Roy’s GoFundMe campaign called Dexcom for Ryder. Some of the funds will go towards Ryder’s care and any left over will be donated to children’s hospitals in Ontario.
“We did want to set up a fundraiser to help cover some of the costs of our son’s care, but if the government doesn’t want to help fund CGMs, we decided that we’re going to do it ourselves,” said Roy.
“We are going to raise money so that these hospitals can provide Dexcom CGMs to newly diagnosed babies and toddlers. The more money we raise, the more money we can donate. Hopefully, the government will notice.”
Roy also created a petition on Change.org to try and get Dexcom CGMs fully covered by the government for children aged 0 to 3.
So far, the petition has over 1,600 signatures.
To purchase a copy of “Little Shots for Little Tots,” visit amzn.to/2M3XGto.
To donate to Dexcom for Ryder, visit bit.ly/3qyjZGC.
Colleen Romaniuk is a reporter for the Local Journalism Initiative, which is funded by the Government of Canada.