Our 2020 Champions

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Two years ago, Sydnee was diagnosed with a serious heart condition and underwent surgery in Edmonton. While the operation to correct her heart was successful, when Sydnee woke up, she couldn’t speak, read or even recognize letters of the alphabet. An MRI revealed that Sydnee had suffered a massive stroke during her operation. Her right side was paralyzed and as an avid dancer, it was her worst fear come true.

Sydnee recognized her mom and dad, but her only ways of communicating were eye contact or limited movements. It was when she was transferred to the Alberta Children’s Hospital to begin a very long road of recovery that she met a neurologist and his team. One of the treatments she had to help with her rehabilitation was a robotic device called the KINARM. This robot allowed Sydnee to play video games designed to help her motor and sensory recovery.

While dancing may have taken a backseat for now, Sydnee’s determined attitude has helped her to excel in other areas, and even got up on her surfboard this summer at the lake. Sydnee has a very profound understanding of not only what she’s been through, but what was done for her to save her life and get her up walking and talking again.

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Over the first two years of his life, Ryland’s shunt kept failing, resulting in countless trips to the emergency room. Now an active seven-year-old, Ryland shows no signs of slowing down. He takes medication twice a day to control his seizures, and he’s always happy to visit his friends at the hospital.

Ryland doesn’t let his mobility issue keep him from trying all kinds of different activities, and he is always commenting on how he’s going to get big strong muscles when he grows up. No matter what the situation is, Ryland is always happy, rarely complains and just goes with the flow.

Ryland is still learning about his medical condition. He knows that he needs to put sunscreen on his scars on his head, and he knows that sometimes his head hurts.

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Days after being rushed into the world via an emergency C-section, it was clear that Blayke had beaten remarkable odds by surviving to birth. That’s because she was born with a rare chromosomal disorder, called Turner syndrome, which affects only girls and has a 99 per cent mortality rate in utero.

In addition to being short in stature, Blayke experienced a host of health problems as a result of her condition. When she was just three weeks old, doctors performed heart surgery to correct a narrowing of the aorta. Over the years, the family were regulars at BC Children’s Hospital as a result of chronic pneumonia, mononucleosis and other health scares. Blayke’s health problems became more complex after she was diagnosed with two additional heart defects at the age of four—which she underwent open-heart surgery to treat. All told, Blayke has been seen by 12 different departments at BC Children’s Hospital.

Despite her ongoing health issues, the seven-year-old is determined to live each day to the fullest—which includes plenty of horseback riding, bike riding and video games.

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At 5 months old, Brady’s parents noticed unusual spots on his body. He was seen by a dermatologist who diagnosed the little boy with Type 1 Neurofibromatosis – a genetic disorder that causes tumours to form on nerve tissue. These tumours can develop anywhere in the nervous system, including the brain, spinal cord and nerves.

The family continued to monitor spots on his skin and later benign tumour bumps appeared. But when Brady was six, a curve in his spine appeared. An MRI detected Brady had a plexiform neurofibroma – which is a larger, more extensive tumour – growing off his spine. Because it was so large, it caused Brady’s spine to bend, much like a tree with branches on one side being too heavy. This tumour is not removable so Brady has now had three spinal surgeries to implant rods into his back to keep his spine straighter.

Despite the rods in his back and the major surgeries he has had, now 12-year-old Brady is perseverant and doesn’t let anything stand in his way. Brady will need to continue to visit the Children’s Hospital as his tumour growths require continued monitoring and his spinal rods need to be adjusted as he grows.

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Quinn can tell you exactly what her condition is, what surgeries, tests and treatments she has had and why.

Quinn was diagnosed with meningocele, one of three main types of spina bifida, a condition that develops a defect in the formation of the spine. Quinn also had a tethered spinal cord, a condition where the spinal cord is attached (tethered) at the base of the spine and cannot move freely.

Despite all the pain she has experienced through her surgeries, Quinn’s positive attitude continues to shine through. Making others smile and laugh is a big part of her day and the staff of the Janeway Hospital has been the recipient of her special gift. Her bravery has no limits and has been an incredible source of support for her mom, Kim.

Because of a growth hormone deficiency, she is smaller than other girls her age, but she doesn’t let that stop her! Her quirky sense of humour, her determination and courage, and her never-ending patience make her truly extraordinary.

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Wanting to expand their family, Alicia and Joe Boutilier, and their children Bethany and Nick, travelled to China, not once, but twice, to adopt two sons – Jiesheng and Ben. Both boys had formed a strong bond to each other during their time together in an orphanage. After arriving home with Jiesheng it became clear to all of them that they needed to go back for Ben too.

Prior to Jiesheng’s arrival, the Boutilier family consulted with an orthopaedic surgeon at the IWK Health Centre and learned that it was likely he had a condition called Arthrogryposis. This was confirmed during his initial appointments at the IWK after he arrived in Canada. It’s a congenital disorder that has multiple joint contractures which essentially means the curving of joints. In Jiesheng’s case, the bottom of his feet were facing upwards. His initial treatment consisted of 17 weekly casts used to help slowly move his bones in the right direction. Following this he required surgery to help further correct his feet and then additional casting. Jiesheng proved how resilient he is by walking just hours after his final casting came off!

Throughout Jiesheng’s care and treatment at the IWK the family was preparing for the arrival of Ben. On May 20, 2013 he too joined the Boutilier family – an exciting and emotional day for everyone. And, just like his brother, Ben also needed support from the care teams at the IWK. Diagnosed with scoliosis, Ben regularly sees the Spina Bifida clinic for monitoring. He has what is called a ‘tethered cord’ which means his spinal cord is tethered around his spine restricting movement. He is currently monitored by the IWK team who will determine when surgical intervention is needed.

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At age one, Eli wasn’t hitting his milestones so he was referred to CHEO’s neurology team. For the next 10 years Eli’s treatment followed a winding path through CHEO that included multiple tests and visits to many departments.

The family was eligible for exome sequencing which involved taking blood samples from dad, Richard, mom, Judy and Eli and having all 20,000 genes per person sequenced and compared. This led to the diagnosis of a rare condition called benign hereditary chorea or brain-lung-thyroid syndrome which gave Eli a name for his condition. He now has a treatment plan and access to a team of specialists who can help.

He has a new confidence since his diagnosis. He knows he is different but it makes him feel good to put a name to the symptoms. He says, “I know what it does to me and how it affects parts of my body.” Eli is an advocate for himself and will continue to be. He is already fundraising for CHEO. In lieu of presents he asked friends to give money to CHEO for his tenth birthday. He wants the scientists to have money to learn more about his condition. He regularly says he wants to be scientist when he grows up to do research on rare diseases and help other kids like him.

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At 11 years old, Raynham was thirsty all the time and losing a lot of weight. She was treated with antibiotics, as it was assumed that she was suffering from some sort of persistent infection. Then one day, she fell into a coma. She was rushed to McMaster Children’s Hospital as her brain was swelling and her body systems were shutting down due to complications from type 1 diabetes. She was at high risk of suffering a stroke and having permanent brain damage if she survived at all.

Her skyrocketing blood-sugar levels were brought down and she slowly regained consciousness. On the third day, the swelling in her brain began to subside. Luckily, there were no signs of brain damage. Raynham had lost a lot of muscle, her joints were weakened and her gastrointestinal tract was damaged. She worked closely with Child Life Specialists and psychotherapists to help her overcome anxiety from the ordeal, and she began a modified diet that was designed to keep her blood sugars normalized and help her regain muscle. A glucose-monitoring device was implanted beneath her skin to measure her blood sugar levels every five minutes. An insulin pump tube is also inserted under her skin and it delivers insulin continuously. However, Raynham must carry the pump at all times and make decisions about dosage based on her level of activity and what she eats. Today, Raynham is thriving and enjoying the life of a normal teenager.

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In 2014, Teaghan started experiencing pain in her stomach, back and head. When it wouldn’t go away, her mom took her to get checked out by a paediatrican. That was when they discovered her liver was enlarged. After multiple tests and a liver biopsy, it was determined that Teaghan had Lysosomal acid lipase deficiency (LAL-D), a rare, metabolic disorder that can cause a buildup of fatty tissue and, ultimately, liver failure.

Now on life-saving enzyme medication, Teaghan’s liver is back to normal size and is doing fantastic. However, her life isn’t back to normal. Every other Monday, Teaghan spends the day at Children’s Hospital to receive the medication. And although she misses a lot of school, Teaghan has lots of friends at Children’s Hospital to make her stays easier, like Erika her Child Life Specialist, Gill her Art Therapist, and Ollie the Therapeutic Clown!

She will continue these appointments for the rest of her life, or until there is a cure for her metabolic disorder. Despite all that she goes through, Teaghan is a happy 12-year-old who loves to do gymnastics and swim.

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When Gregory was born, the doctors were concerned about baby Gregory’s eyes protruding more than usual. Follow-ups with his paediatrician led to CT scans at SickKids to rule out tumours, but those all came back negative. Then suddenly at six weeks old, Gregory began vomiting blood, leading to surgery at SickKids for pyloric stenosis, a condition that affects the opening between the stomach and small intestine. His eyes, however, remained a mystery.

It was not until a routine visit to the paediatrician at a year-and-a-half old, and a subsequent consult with the medical director of the SickKids Centre for Craniofacial Care and Research that led to the diagnosis that changed everything. Gregory had Crouzon Syndrome, a rare disorder affecting the growth of the bones in his skull. The mystery of his eyes was now solved as doctors finally understood why he had such shallow eye sockets. Crouzon Syndrome also explained Gregory’s underdeveloped upper jaw, his nasal airway obstruction and his recently diagnosed hearing loss.

This began a chain of events that led Gregory to call SickKids his “second home” as barely a year passed before the two-year-old began complaining of severe headaches. Gregory has had his skull expanded a total of four times – first at age 3, then age 9, then again at age 11 and most recently at age 12. These huge operations involved teams of specialists working together especially since Gregory also has the complication of having a Chiari Malformation and a shunt in his brain requiring frequent intracranial pressure monitoring and shunt revisions.

Shunts unfortunately rarely last a lifetime, and when Gregory’s first shunt failed, the buildup of pressure in his brain was enough to damage his optic nerve, rendering him legally blind by the age of 11. This was a terrible blow to Gregory and his family. However, Gregory has taken it all in stride, choosing to “move on” and making the best with what he has.

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In April 2014, at the age of 11, Alexe was diagnosed with Ewing’s sarcoma. She has had many chemotherapy treatments, radiotherapy and a stem cell transplant while being hospitalized every two to three weeks. But what was most difficult for Alexe was to put aside her passion for figure skating and soccer. By the end of October 2014, Alexe had no more traces of cancer, but the risk of recurrence was still high. To keep the cancer at bay, a decision was made to do an allograft to decrease her chances of remission.

But the procedure was not effective, and in December 2016 she had a relapse. Her cancer became more and more aggressive and in April 2018, she had a relapse for the second time as the cancer spread and required additional radiation and chemotherapy. Due to her ongoing treatment, Alexe can no longer pursue her passion for figure skating. However, she continued to teach.

Despite her ongoing battles, Alexe is a happy, positive and determined young girl. The obstacles she faces have never defeated her spirit, and she’s an endless source of inspiration for her entire family.

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Torrie received a shocking diagnosis of a rare blood disease at nine years old. Two weeks before her diagnosis, Torrie noticed some unusual symptoms while she was at a dance competition with a sore throat, loss of appetite, and a mysterious rash. She was admitted with a low platelet count, and soon after had no platelet count at all so she was airlifted to the PICU by the Saskatchewan Paediatric Transport Team.

She was soon diagnosed with Thrombotic Thrombocytopenic Purpura (TTP) Autoimmune Blood Disease which can be fatal if not treated right away. Luckily for Torrie, a new Pheresis machine was purchased just six months prior to her diagnosis. Without the Pheresis machine, children like Torrie would have to travel out of province for treatment – a long trip for a child in such a critical condition.

To keep her health in check, Torrie gets blood work done every few months and visits a paediatric hematologist at Jim Pattison Children’s Hospital every 3 months. To help her cope with her illness anxiety she also visits a counsellor to help her stay positive and hopeful for the future as she adjusts to her new condition. Despite everything Torrie is determined to not let her disease take away her quality of life and continues to enjoy each day with her friends and family.

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