Jaxon and Jayce's confidence in their Cystic Fibrosis care means they can chase their dreams.
At just two days old, twin brother Jaxon needed emergency surgery due to a Cystic Fibrosis (CF) complication.
Even though he had no formal diagnosis, his team at St. Thomas knew the early signs of CF and sent him to the specialized care he needed at Children’s Hospital in London.
Just a tiny newborn, Jaxon needed life-saving surgery and was facing a 50 per cent chance of survival.
As home to a level three NICU and with 60% of twins born prematurely, Children’s Hospital always needs to be prepared. Donor funding makes that preparedness possible. You help ensure tiny newborns get the best care – even with multiple complex diagnoses.
At first, it seemed twin Jayce did not have CF as he was showing none of the early signs Jaxon had. But after two weeks went by, Jayce was also failing to thrive – his weight was dropping, and other symptoms began popping up.
A sweat test revealed Jayce also had CF.
The boys’ mother, Angela, recalls the whirlwind of emotions from those early days: “You have so many questions as a parent. Will they live a normal life? Will they graduate, fall in love, have families of their own?”
Life with CF means a structured routine. Every morning starts at 7 a.m. with nebulizer treatments, Positive Expiratory Pressure (PEP) therapy, polyp sprays, and enzymes before breakfast. The boys repeat this regimen in the evening—30 minutes in the morning, 30 minutes at night.
Angela shared how they make it through their worries about the future, saying, “We work hard to live in the present. Today, we give CF what it needs, and nothing more.”
Each year that has gone by has been the boys’ chance to grow in their care. Their Children’s Hospital team has become a second family. The boys visit every three months for lung function tests (PFTs) and routine checkups. Over the years, they’ve been supported by an exceptional team, including Dr. Price, a nutritionist, social worker, physiotherapist, and diabetes specialists.
“The team at Children’s is the reason my boys are alive,” Angela says. “Their dedication gives me peace of mind. Every visit, they reassure me that all the hard work we do every day is paying off.” Angela proudly shares, “CF doesn’t take a vacation, so neither do we.”
Alongside the hard work, Children’s Hospital also gives the boys moments of joy thanks to people like Ollie – Children’s beloved and fully donor-funded Therapeutic Clown. From playing video games with them to making each boy their own balloon animals, Ollie helps turn challenging days into mischief and fun.
Both Jaxon and Jayce have grown up learning the ins and outs of their diagnosis, while also having moments of relief and joy at Children’s. Because of their holistic care, Jaxon and Jayce both understand their treatments and feel ownership over their care.
Jaxon and Jayce celebrated their 16th birthdays this November, and it’s clear now more than ever that living with Cystic Fibrosis means taking charge of their care so they can feel confident in chasing the other parts of life, like their hobbies and dreams.
Jaxon is ever the performer. He loves acting and animation and is working on an animated series. He also hopes to launch a YouTube channel featuring gaming and animation.
Jayce has his sights set on becoming a lawyer, but in his spare time, loves gaming—especially Minecraft—and is fascinated by special effects in movies. His artistic side shines in his doodles and imaginative sketches.
Thanks to their ongoing care and the relationship they have built with Children’s Hospital, Jaxon and Jayce are thriving teenagers.
This holiday season, you can help ensure that more children and teens like Jaxon and Jayce can take charge of their care!
When you make a gift to Children’s Health Foundation today, you’ll have double the impact! Thanks to the Charabin Family Match, a gift of $50 becomes $100, and a gift of $100 becomes $200. You can change the lives of our children and youth facing chronic diagnoses.
Hope lives at Children’s because of you.
