Faces of Mito Featured

Remembering Charlie: The Leitis family shares their story

Before they knew what mitochondrial disease was, Dani and Ivars Leitis had what they considered to be the perfect family. Their daughter, Riley, was thrilled to have become a big sister at the age of seven, and baby Charlie (born June 4, 2021) was reaching all his milestones. “Everything in our lives was going well,” says Ivars. “We didn’t have everything, but we had it all.”

“We had no clue that Charlie was silently fighting a battle that would lead to a devastating loss,” says Dani.

Charlie was big on snuggles and loved being held. “His favourite place was intently watching the world over Ivars’ left shoulder,” says Dani. “He had the greatest smile and laugh and big beautiful eyes. He was always watching what was going on around him.”

Charlie loved to make music, hum along to songs, play with his toys and the family’s dog Dusty, and scoot down the hall to his big sister’s room to see her. “The way Charlie’s face lit up for Riley was filled with pure love,” says Dani. Riley loved to give him piggyback rides, which were guaranteed to make him smile or laugh.

While Charlie was a happy, playful toddler, he faced challenges from the start. “He was very demanding in his first year as he was extremely fussy,” says Dani. “He struggled with breastfeeding. He seemed to get tired, as though it was a lot of work, and we ended up having to supplement with formula. We noticed he sometimes made a gurgling noise when he was breathing, but we were told that he just had underdeveloped vocal cords because he was premature. He had a ‘slight nystagmus’ we were told, which is involuntary eye movement. He also had what we thought were breath-holding spells. He’d cry so hard he’d stop breathing.

As it continued to progress, he’d go completely stiff – arching his back, his hands and toes would curl up and he looked like all the muscles in his body were seizing.” A visit to the family doctor sent Charlie into one of these spells. Witnessing it in person, the doctor became concerned that Charlie may be having seizures and referred him to a pediatrician. This would be the first time a pediatrician would dismiss concerns without any testing.

“Charlie started to seem a lot better after his first birthday,” says Dani. “The gurgle was gone and the breath-holding spells had nearly stopped. He continued meeting his milestones. But somewhere after the 16-month mark, we started noticing that Charlie was losing weight. He had been walking with support since 10 months but wouldn’t progress.  He also wasn’t using his words anymore. It happened so quickly.” The family doctor once again put in referrals for pediatricians, but it wouldn’t be until 19 months – January 2023, with desperate pleas from the family doctor – that two more pediatricians would finally accept Charlie as a patient.

The family’s concerns were mostly dismissed by the first pediatrician they saw and they were told to check back in four months. Unfortunately, Charlie didn’t have four months.

Unsatisfied, the family moved on to a third pediatrician. She ordered blood work, tests, and referrals, including a dietitian and an occupational therapist (OT) who would support the family at home. The OT noticed that Charlie slouched a lot in his highchair, causing fatigue, and that his oral muscles were taking a long time to fire at the beginning of a meal. They switched from a highchair to a booster chair, added dietitian-provided supplements, and incorporated special foods to wake up his muscles, along with unlimited amounts of his favourite foods – chicken nuggets, chocolate chip panettone, and chocolate milk – to increase calories. Charlie started gaining weight quickly. “He was even napping less,” says Dani. “We started noticing him figuring out new ways to move and engage with things and people.”

The Leitis’ optimism was high until March of 2023, when Charlie came down with COVID. Although he appeared to have recovered from the virus, he had a lingering cough and the gurgling was back. After a particularly difficult morning with his cough, the Leitis family took Charlie to McMaster Children’s Hospital for the first time. Charlie was prescribed a steroid inhaler in addition to a rescue inhaler he was already on, and they were sent on their way.

Charlie appeared to start recovering and relief was setting in until late one evening he started choking more on his fluids at dinner. That night, Dani and Ivars were woken multiple times to Charlie screaming in his sleep, much like he was having a night terror – something his sister had experienced as a toddler.

The next morning, Charlie was not himself. “He had no interest in food,” Dani recalls. “He wouldn’t settle to nap and his breathing seemed weird. His eyelids were heavy and he was staring blankly at me.”

Dani took Charlie to the hospital, and Ivars met her there. Charlie was admitted right away. His oxygen was just 39%. Doctors were perplexed as he was not presenting like anyone with such low oxygen. Charlie would eventually be intubated. During this process, concerns arose that he may have suffered a seizure, but it was never confirmed.

Charlie spent two weeks in the hospital while doctors and specialists tried to determine the cause of his distress. His lungs were full of fluid, causing his left lung to collapse and bringing focus there, until an MRI test showed that his brain stem (which controls the lungs, speech, swallowing, eye movement, and more) was covered in lesions. With the damage to the brain stem, they couldn’t save his lung.

Charlie never came home. He earned his angel wings on April 10, 2023. The beloved little boy passed away in the arms of his mom, dad, and sister, two months short of turning two.

Months later, his family received Charlie’s official diagnosis of Leigh syndrome, a rare and fatal genetic mitochondrial disease with no cure. Charlie’s Leigh syndrome was due to a gene deletion, making it an exceptionally rare case.

When asked if there’s anything they know now that they wish they’d known before, the Leitis family found it a difficult question. Charlie lived a normal life for a toddler.

The family went to Sauble Beach, Santa’s Village, Canada’s Wonderland, Niagara Falls, and a Blue Jays game. Charlie took a music class, spent life at a dance studio, and saw Riley dance in two recitals. “These are all things that we wouldn’t have felt safe doing had we known he was immunocompromised,” says Dani.

“We often wonder whether we could have better protected him had we known sooner, but in us not knowing, Charlie was able to enjoy a better quality of life. We want to continue Charlie’s life by sharing his story,” says Ivars, “and we hope that sharing his story makes a difference in the life of another child. Our hope is that through his story and better awareness, health care specialists will see the signs and symptoms sooner.”

Life with Evan

I’m Evan’s dad. I’m also Julia’s dad, Sarah’s husband, an endurance junkie, MitoCanada’s co-founder, and the CEO of a digital health company called Lumiio. Today, though, I want to tell you about my son Evan and what it’s like to be his dad.

Evan was the happiest little boy. We’re a super active family, so when he was young we were always hiking, skiing, and playing outside together. He loved that. And he was really cheeky. He had this coy sense of humour and a glint in his eye.

I wish we’d known that Evan had dysfunctional mitochondria and was at a high risk of developing a mitochondrial disease. If we’d known, it would have changed our whole approach to his exposure to stressors. Hindsight is 20/20.

Evan’s disease onset was sudden. When he was four, Evan woke up one day with stomach pain. Doctors suspected appendicitis and recommended surgery. Unfortunately, surgery and anesthetic are pretty major stressors.

During the surgery, Evan suffered a significant brain injury. He was initially diagnosed with acute disseminated encephalomyelitis (ADEM), which is a neurological disorder characterized by brief but widespread inflammation in the brain and spinal cord that damages the myelin. Overnight, Evan became non-verbal and needed to be tube-fed. Nine out of ten kids would fully recover from this, so we didn’t panic – we thought we were dealing with an acute brain injury, and that we’d see a lot of improvement. But when Evan didn’t improve and started developing seizures, his clinical team realized something more was going on.

It took us a while to accept that he wasn’t going to improve – that he’d be in a wheelchair and need to be tube-fed probably for life.

It was such an abrupt, jarring change. It turned our lives completely upside down. And there was a massive amount of grief. We lost a lot of the Evan we knew and loved, and we also mourned the loss of this whole life that we had envisioned for him, that we’d thought was ahead of us. Suddenly, the future looked so different from what we’d imagined – for Evan and for all of us.

It took about a year of testing for Evan to get a clinical diagnosis of mitochondrial disease. Fifteen years later, we still don’t know the underlying genetic cause for his disease (even after completing DNA sequencing three times).

Life with mito has been tough for Evan. Not being able to communicate has been a massive challenge and source of frustration. He’s dealt with chronic pain and many surgeries over the years. Evan’s muscles are always turned on and he suffers from chronic seizures, so he’s on a lot of medications, which have a lot of side effects.

It has also been a challenge navigating Evan’s care. When he was little, he was almost like a baby. We could just pick him up and move him around – it was fairly easy physically. But as he got older and heavier, that became more and more challenging. It was hard on our backs, lifting him in and out of the car or wherever. Eventually, it came to a point where we could no longer do it. We’ve had to shoulder the costs of adaptive devices, wheelchair-accessible vehicles, and a wheelchair-accessible home.

Despite the challenges, we always reminded ourselves that Evan was still with us. He could still smile and we could tell that he had quality of life. Sarah and I are optimistic people. We’re really just focused on the here and now, and on trying to give Evan the best life that we can, because we don’t know how long it’s going to last.

When Evan was first diagnosed, we quickly realized that there was nowhere to turn in Canada to find support with navigating the mitochondrial disease health care journey, connecting with others, or learning about mito. At a United Mitochondrial Disease Foundation conference in the U.S., I met several other Canadian families. We said, “Hey, we need to do something back in Canada.”

So we co-founded MitoCanada to help build awareness, increase education, and advance research and clinical knowledge while also preventing mitochondrial diseases from manifesting in others. We became a registered charity in 2010, and the rest is history.

Co-founding MitoCanada helped me on a personal level, too. When Evan got sick, I felt helpless that I couldn’t do more for my child. Starting the organization made me feel less helpless and knowing that we could potentially help others was also uplifting.

Evan is 19 years old now. He loves music, getting outside for walks, and watching shows and movies on his iPad. He’s a huge fan of Frozen! And he still has that glint in his eye and his sense of humour – I see it in the books he enjoys, like the Pigeon book series by Mo Willems. Seeing Evan smile brings us so much joy.

The last few years have probably been Evan’s most comfortable and best years. He recently graduated high school, which he loved. He made some great connections with his teachers and classmates – he has a way with people, and is super expressive and engaging in communicating through his eyes. The transition from pediatric to adult care has gone smoothly, which is fantastic and better than we expected.

Another big change was Evan moving into a group home about 16 months ago. It’s been a big change for everyone and great for him. He has three adult roommates so he has some amazing social stimulation and interaction. He’s doing really well!

And now for the first time, our house is our own. We had so many caregivers and nurses coming and going over the years, looking after Evan, that there was basically no privacy in our home. Now, we’re spending more time together as a family and enjoying more quality time with our daughter Julia, who’s in grade 12. Fortunately, Evan only lives a 10-minute drive away so we can pop over to visit him anytime.

Here are some of my takeaways from my story and life with Evan. Never give up advocating for yourself or a loved one. Sarah and I were relentless in trying to find answers for Evan – and for every problem, truly, there’s a solution. Also – look after your mitochondrial health. The best way to do that is through exercising and living as healthy a lifestyle as possible. And finally, find community. I’m so grateful for MitoCanada and our MitoCommunity. The people who rally around this cause have been unbelievable and we’ve done some incredible work as an organization.

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