Little SickKids Patient Ambassador Stories

The inspiring, hilarious, and very brave Bella was born with three very rare conditions: Severe Combined Immunodeficiency (SCID), Hirschsprung’s Disease, and Dwarfism. These left her with no immune system and a dead bowel, leading to numerous procedures, treatments, a bowel transplant, and long hospital stays.

Through it all, Bella and her mom Kyla were inspired to share their journey online from their homeprovince of Saskatchewan, where they educated others about Bella’s conditions, connected with families, and spread their moments of joy and laughter (including dance breaks) amidst all the challenges. They reached more than 7 million followers on TikTok who would come to know Bella as Bella Brave. Bella was fiercely brave in sharing her own story as well as advocating for others. She consistently gave back to the medical community and served as an ambassador for two children’s hospitals: Jim Pattison Children’s Hospital in Saskatoon and SickKids in Toronto.

In 2020, Bella was in bowel failure. Her SickKids team said she would need a bowel transplant. Bella was on the waitlist for three years as her family patiently and anxiously awaited an organ donor. In 2023, when Bella was nine, they got the call. They immediately planned their air ambulance flight to Toronto.

Again and again, Bella defied expectations. Her family was told her transplant could take 10 to 20 hours, though it only took eight for Bella. She even surpassed her physiotherapist’s goal of standing for 10 seconds just days after her surgery. Instead, she had gained enough strength to walk and feed the pigeons outside of SickKids. It was an incredible response to a life-saving procedure. The entire time, Kyla shared Bella’s journey for their followers, including Bella’s joy during story time at the SickKids library with the Hospital’s beloved therapeutic clowns.

Although Bella looked and felt strong, it can take months to recover from a bowel transplant. And with Bella’s condition being so rare, it caused worry for complications. Bella and her entire family were taking things day by day – as they had learned to do. All the while, they felt the love and support of their entire medical team and supporters near and far.

About one year after transplant, when Bella was ten, she developed a serious infection in her lungs. She passed peacefully in her parents’ arms in her room at SickKids.

Bella’s legacy lives on through the incredible content she made on Instagram and TikTok. Her parents, Kyla and Lyle, have maintained their online presence and even started Beyond Brave, a podcast sharing their journey and Bella’s story to inspire others. You can follow all of their work here.

At age 14, at one of her routine screenings, Juliet was diagnosed with leukemia. But new research shows she could have been diagnosed months earlier. And Juliet played a big role in helping scientists discover how. 

SickKids researchers recently developed a new technique known as the “liquid biopsy,” which looks for DNA fragments left by cancerous cells in blood samples. Using this technique, researchers discovered they’re able to detect cancer earlier in people with LFS – often even before a tumour becomes visible, or symptoms start. They did this by analyzing 170 blood samples from 82 individuals with LFS collected over several years, including from Juliet. Their findings show that early signs of Juliet’s leukemia were present months earlier and provide a proof-of-principle framework that may support the detection of specific cancers earlier for other individuals with LFS.   

Until now, surveillance in children with cancer or in children with a genetic predisposition to cancer has been burdensome to families and the health care system. Now, scientists can use a simple, non-invasive blood test to identify when, and sometimes where, a cancer is occurring. This is a gamechanger for young patients like Juliet. 

Juliet’s leukemia has since gone into remission, and her family is so happy that the next generation LFS patients will get to experience the next level in care – more precise diagnoses even earlier.  

Juliet graduated from SickKids at age 18, as she transitioned into adult care. She took the opportunity to present her medical team with the artwork made for them by Francesca Pasubio, a gifted artist and Juliet’s brother’s girlfriend.  

Although everyone is proud to see Juliet doing so well, her presence will be dearly missed at SickKids – where she had an immense impact in so many ways. 

When Harper’s mom, Hsin, was pregnant, a fetal ultrasound confirmed that Harper had a serious heart malformation. Two months after she was born, Harper experienced supraventricular tachycardia, an unusually fast heartbeat that affects the heart’s upper chambers. After being rushed to her local hospital, Harper was resuscitated and put on medication.  

Harper was four when she had her first heart surgery. It was a long, difficult journey that required extensive critical care and rehab, followed by a second surgery. But Harper’s health continued to deteriorate, and she was put on the heart-transplant list.  

As a bridge to transplant, Harper’s SickKids team gave her a ventricular assist device, or a VAD. VADs are machines that pump blood throughout the body. Harper’s VAD would ease the burden on her heart, allowing her to rest and get stronger while she waited for a transplant. The machine was nearly as big as Harper, and it would be at her side constantly while she ate, slept, and walked the halls at SickKids. Harper said this was just a sign she had a big heart. She even gave the VAD hugs and kisses.  

Harper wouldn’t be able to leave the hospital while she was attached to the VAD. And they had no idea how long it could take until a new heart became available. But they knew the VAD was Harper’s best chance at staying healthy until the time came. Harper, her family, and her entire health-care team were taking things day by day – and they had hope. 

In July 2022, Harper’s family received a miracle. A SickKids nurse came into their room and announced they had found a potential donor heart for Harper. There were lots of mixed emotions. There was sadness for the donor family, who were dealing with an unimaginable loss. And Harper’s family tried not to get excited too quickly. There was still work to do to make sure the heart was the right one for Harper. While they waited, Harper wrote a letter and drew a picture for the donor family, thanking them for giving them this miraculous gift. 

Finally, Harper and her family got the news. She would be getting a new heart.  

Just five days after her final surgery, Harper was discharged from the hospital. That fall, she was able to start school and get back to her life outside the walls of SickKids. Today, her and her family are still taking things day by day – endlessly grateful they kept up hope amidst the most challenging and uncertain times.  

Harper is a determined young girl who loves singing, dancing, and riding her bike. Her parents, Andrew and Hsin, and her older brother, Oliver, remain her biggest cheerleaders. 

At two-years-old, Maya developed a cold that wouldn’t go away. She was diagnosed with pneumonia and given antibiotics and a puffer – but she just kept getting more and more ill. She wasn’t eating well, she had no energy to play, and she had a persistent fever. Eventually her eyes started rolling to the back of her head. Terrified, Maya’s parents Annette and Jason took her to the local hospital for testing. That’s when they learned that Maya had sickle cell disease (SCD) and were referred to the SCD team at SickKids. As soon they got there, they knew they had become part of another family: the SickKids family. 

Jason and Annette learned that in addition to sickle genes, Maya had a rare variant of hemoglobin known as the Stanleyville strain. This explained why doctors did not detect her condition earlier. After all, Maya had been screened for sickle cells as a newborn. 

Over the years, Maya and her family have learned as much as they can about SCD through the teaching and care of her medical team at SickKids. They also learned that Maya’s experience of SCD is unique – just like her. Unlike many children with SCD, Maya doesn’t experience severe bone pain when she has a sickle cell crisis. Instead, she develops symptoms in her lungs and is prone to pneumonia. She cannot tolerate extreme weather conditions or go into cold water for swimming.  Additionally, she gets easily winded, meaning she can’t play the way her school peers do.  

Maya is described by her parents as having a big personality. She’s a young fashionista, loves creative pursuits, and enjoys being in front of a camera. Her family is eager to dispel myths and raise awareness about SCD, as well as help SickKids advance research for new treatment options.  

Jason shared that he won’t bring any of his children to any other hospital, and his family will never move far away from SickKids. “The staff are so friendly,” agreed Annette. “They all know and love Maya, and it feels like family when we are there.” 

Rowan’s journey began when he was still in utero. Extensive genetic testing revealed that Rowan had severe congenital diaphragmatic hernia (CDH). This means he had a hole in his diaphragm, which allowed abdominal organs to move into his chest and made it difficult for his lungs to develop. His diagnosis was rare, and life-threatening. At his home hospital in Newfoundland, Rowan was deemed likely “incompatible with life” at 20 weeks gestation. His parents, Stephanie and Tiffany, were devastated. But after consultation appointments with various teams and specialists, including those at SickKids, they began to see a small ray of hope. 

On November 7, 2023, Stephanie and Tiffany flew to Toronto to meet with Dr. Greg Ryan at Mount Sinai Hospital. Dr. Ryan performed an in-utero procedure where a balloon was placed in Rowan’s trachea – crucial for his survival. The following January, Rowan was born. During labour, they briefly lost Rowan’s heartbeat, but Dr. Ryan delivered him safely. Rowan was quickly transferred to SickKids via an underground tunnel, where he got the immediate and complex care he needed. 

Rowan and his parents spent more than 125 days at SickKids, where he underwent multiple major surgeries and received specialized care from a dedicated team of health care professionals. The nurses often brought small comforts and surprises to brighten their days, such as personalized notes and small gifts, making a challenging time a bit more bearable. 

Rowan’s final discharge from SickKids was marked with a photo of him with his “bravery beads”; each one earned when Rowan underwent a difficult procedure or event. The family flew home to Newfoundland, where they were welcomed by their loved ones, eagerly waiting with signs and balloons.  

Today, Rowan continues to make progress. He meets with his medical team at SickKids through Connected Care, a virtual platform, every three months. These appointments allow his health care providers to monitor his condition and provide ongoing support. Rowan flies back to Toronto once a year for a week of follow-up, in-person appointments. 

Rowan’s family keeps telling their SickKids story to provide hope and inspiration to other families at the beginning of theirs. Stephanie and Tiffany shared this message:  

“The amazing teams at SickKids not only saved our son’s life, but helped him to flourish into the cheeky, smiley little boy that he is today.” 

By the time Rian was three months old, her parents, Shillann and Mike, started to get really concerned. Unlike most babies, Rian barely cried, and she would sleep for up to 23.5 hours a day. She was increasingly irritable during the short time she was awake, and she was unable to hold her head up. Shillann’s grandmother suggested they take Rian to SickKids, and they listened.

At SickKids, Rian went through seven months of complicated testing. She was tested for over 1000 possible conditions. Finally, Rian’s family got a diagnosis.

Rian had a rare neurotransmitter disorder called AADC Deficiency. In fact, she was the first patient to ever receive this diagnosis at SickKids (and ten years later, she is still the only patient at SickKids with this condition).

Like many rare diseases, there is no known cure for AADC Deficiency. Thankfully, Rian’s family learned of a life-changing procedure that could drastically improve her quality of life. But barely one-year-old Rian was too young to undergo the operation right away. She’d need to be at least five-years-old to be eligible to received treatment. This meant Rian’s family, and her SickKids team, needed to do everything they could to keep her alive for the next four years.

Throughout this time, Rian was placed on a schedule of 21 medications daily. She experienced persistent and complicated medical issues. She never gained head control or any physical milestones. She was weak and had a severely compromised immune system. She would experience painful, seizure-like episodes called OGC’s every three to four days, her body would get stiff, and her eyes would roll to the back of her head, often lasting between 4-8 hours. Between attending regular doctor’s appointments, frantic visits to the emergency department and/or hospital admissions – Rian and her family experienced countless trips to SickKids.

It was an incredibly challenging few years for everyone. They were doing everything they could to ensure Rian made it to the operating table. But there were no guarantees.

Fast-forward to 2019 in Poland: Rian is among the first in the world to undergo an 8.5-hour brain surgery. Her surgery essentially rewrote her DNA through accelerating gene therapy. This innovative procedure was a final source of hope for Rian and her family.

Today, Rian is like a new girl. She is walking independently and learning to communicate her needs. She loves music, swimming, and the Disney princesses. She is becoming more independent every day and stronger with every passing month. Her two brothers are her biggest supporters, next to Shillann and Mike.

Born in Syria on New Year’s Day in 2010, Mariam came into the world with two serious heart conditions—Epstein’s Anomaly and cardiomyopathy. At age three, she had open-heart surgery in Lebanon to repair her heart, but it wasn’t successful. After her family moved to Canada in 2015, Mariam was referred to SickKids. She needed a heart transplant, and in 2017, she got one. 

For a few years, life returned to normal. Mariam swam, played soccer, and got to just be a kid again. But in June 2021, her heart suddenly failed. She collapsed at home. Her older brother performed CPR until the ambulance arrived. 

Back at SickKids, doctors realized her transplanted heart was failing. Medication couldn’t save her. Her only hope was another transplant—but she didn’t have time to wait. That’s when her care team made a bold decision: to implant an artificial heart. This life-saving device, typically used only in adults, had never been implanted in a child at SickKids. It was almost as tall as Mariam and required constant power to operate. The surgery lasted 14 hours. Her chest was so small, it had to be temporarily patched to accommodate the device. But it worked—buying Mariam time. 

Several months later, a second donor heart became available. The transplant was complex but successful. 

Today, Mariam is thriving. She’ll need medication for life, and another transplant may one day be necessary—but for now, she’sfocused on living fully. She swims four times a week, plays soccer and basketball with her big brother Jack, and spends time with her dog, Lucky. 

She also continues to pursue art—a passion sparked during her hospital stay. Her favourite subject? Big, bold hearts. 

Her family is organizing a school fundraiser to give back to the hospital that saved her life—three times.