EmilyIng

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So far Emily Ing has created 66 blog entries.

Alyson Maxwell

Alyson and her husband pose and smile on a patio for a photograph Ever since she can remember, Alyson Maxwell has experienced chronic pain and near- constant headaches. Growing up in the ‘70s and ‘80s, Alyson knew she wasn’t quite like the other kids. “I used to randomly fall down the stairs – my legs would just give out,” she says. “I often tripped and my coordination was horrible. I’d play really hard with the other kids one day and then the next day I’d hang out on the couch with a book or play quietly by myself. I think that I knew, subconsciously, that I had to recharge my body.”

As a young adult, Alyson continued to be challenged by balance and coordination issues, severe GI problems, pain, and fatigue. Doctor visits were all dead ends. “Anytime I went to a new medical professional, the first thing they’d ask was my family medical history,” says Alyson. “I’d say, ‘I’m adopted,’ and that would end the conversation right there.”

Searching for answers

One morning, in her mid-20s, Alyson woke up in particularly bad shape. The entire right side of her body was in extreme pain and her face was numb. Scans and tests turned up nothing. Alyson kept thinking, “What if there’s something in my family that I need to know about?”

Desperate for answers, Alyson registered with an adoption registry. Days later, the phone rang – they had a match.

Alyson met her birth mother, who had her own health challenges, which included profound hearing loss. The search for answers to Alyson’s growing list of symptoms continued. Doctors suspected that Alyson had reflex sympathetic dystrophy – a mysterious disorder causing long-lasting pain – and she was eventually diagnosed with fibromyalgia, but the diagnosis never quite fit. Medications prescribed to Alyson only made her symptoms worse, and doctors had no explanation for why her illness was progressing (fibromyalgia is not a progressive disease).

“I kept plugging along, trying to function, visiting specialist after specialist,” says Alyson. She repeatedly ended up in the ER, where she was accused of being a hypochondriac. “It was a journey of being disbelieved every- where I turned,” she says. It was only after Alyson’s birth mother had a stroke and was diagnosed with mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes (MELAS), a mitochondrial disease primarily affecting the nervous system and muscles, that Alyson began to learn about the condition that had plagued her all her life. “As I read about MELAS symptoms, I was like, ‘Oh, this explains everything,’” says Alyson. “Light bulbs were going off.” After genetic testing, the mystery was finally solved. Alyson would finally be diagnosed with MELAS, at age 44.

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Aiden Procyshyn

“Aiden is one of the happiest kids you’ll ever meet,” says his Mom, Bonnie Procyshyn. “My eldest son is easy going and has the greatest smile. Preferring people to toys, Aiden loves to connect and interact with others.”

When Aiden was born, Bonnie and her husband, Andrei, were told that his newborn screening showed some abnormal results. Despite not receiving a diagnosis for many months, the family was connected with a metabolic specialist. Aiden underwent many tests, but, as is so often the case, none were conclusive.

When Aiden was 6 months old, Bonnie started noticing developmental delays. He wasn’t hitting basic milestones, like sitting up. At nine months, he had no interest in solid foods and was hospitalized for concerns about his failure to thrive.

Aiden started having seizures around his first birthday. This precipitated a switch in focus from a metabolic care team to a neurological one. Whole Genome Sequencing (WGS) was ordered shortly thereafter. The results indicated that Aiden had Leigh’s Syndrome, a debilitating mitochondrial disease. He was 15 months old at this time. Bonnie and Andrei were told it was unlikely their son would see his fifth birthday.

“Aiden’s cells can’t generate enough energy for him to function the way he’d like to,” says Bonnie.

This means frequent naps, sensitivity to heat, and delays in movement and speech. Aiden’s mito is de novo, which means it is the result of a random genetic mutation that could not have been predicted. 97% of his cells are affected.

We don’t know what we don’t know

Before Aiden was born, Bonnie didn’t think about an unfamiliar illness gripping her child. “When you think about starting a family, you may hope for a boy or girl,” she says, “but you really just want a healthy child – that’s what’s important.”

After the possibility of a mitochondrial disorder was first mentioned by Aiden’s doctors, Bonnie and Andrei headed to the internet for information. Not knowing anything about mito, they wanted to learn all they could so they would understand how to help their son. In hindsight, Bonnie says that was a mistake. They found nothing but bad news and worst-case scenarios. It was scary and upsetting. Every change they saw in Aiden was concerning and they couldn’t help thinking the worst.

“Understanding your child’s diagnosis and their needs is critical,” says Bonnie. “As parents of children with mito, we need to learn a new vocabulary and integrate ourselves as part of the healthcare team.”

This can seem impossible when you are reeling from a child’s devastating diagnosis. And, although it is important to be given hope and to understand that the worst-case scenario is not always how it goes,

Bonnie asserts that the facts and brutal honesty are what parents really need in order to actively participate in and advocate for the care of their children.

Bonnie is a strong, energetic, empathetic mom and a dedicated CPA (Chartered Professional Accountant) who enjoys her career. She loves her two boys but concedes that life is challenging. She admits to being chronically tired and rarely being able to find time for herself.

The world is not designed for children with special needs. Planning a fun, family day trip, means concerns about safety, the need to pack special equipment, finding accessible activities and washrooms in the community, all while still having time and energy to enjoy the event.

Two of the biggest challenges for the Procyshyns are i) mobility and ii) time, especially as Aiden grows.

Now approximately 40 pounds, he is getting difficult to lift. They do have an electronic lift in their home, but find it cumbersome and time consuming to use.

Getting through everyday routines, like breakfast before heading out the door to daycare and work in the morning also takes extra time because of Aiden’s needs. Having someone come and help would be welcomed, but it is expensive and difficult to find someone willing to work for short periods of time each day.

Aiden is attending daycare rather than doing half days in kindergarten. Fortunately, their daycare has been fantastic and is next to a centre that offers support for children with special needs. Aiden receives physical, occupational and speech therapy from his amazing team.

Aiden also has Landon, his younger brother. The pair love being together. “Landon has compassion that is amazing to witness,” says Bonnie. “He brings Aiden toys, sings him songs, and can sense the rare occasions when Aiden is frustrated.”

Procyshyn family pose and smile at a football gamePlay is work for kids and Aiden and Landon have found the perfect workspace. They love playing in a bouncy castle that remained in the family basement after a birthday party! It helps Aiden move more and more independently. It’s also fun, soft, safe,surrounded by walls, and offers unintentional benefits like building core and grip strength.

All of the people, activities and devices Aiden has in his life are helping him break through barriers and defy the odds. He is thriving despite his diagnosis and is starting to support weight in his legs, can lift himself up to kneel, which means he can grab things for himself, and he can use a pummel walker with a harness that supports him to get around at home and at daycare.

Aiden and his family are living with challenges that few can understand. Although endless questions remain unanswered, Bonnie refuses to be discouraged. She knows every child is unique and this applies to Aiden. Her son will soon be a sensational six-year-old. He will be starting school next year in a stimulating environment where he will be surrounded by other kids and have the opportunity to develop into a stronger, more independent boy. While Bonnie and Andrei aren’t sure what Aiden’s long-term future will look like, they are loving life and the time they spend together.

© MitoCanada 2022. Shared with permission. Not for reuse or adaptation without consent.

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Zach Seymour

Zach Seymour is an expert at living with mitochondrial disease. He doesn’t have mito himself, but both his mother and brother do.

When Zach was 12, he was running the household. He was doing the family’s cleaning, helping raise his younger brother, and leaning on his grandparents to help balance everything.

During this time, Zach’s Mom was suffering from chronic fatigue and sleeping for 14 hours a day. As a single mother of two, she worked at several jobs to try to make ends meet — when she could.

She suspected mitochondrial disease but was unable to convince doctors in their small, rural town that this was a possibility. It was demoralizing, frustrating, and debilitating, as this lack of willingness to consider mito left them without a diagnosis.

No diagnosis also meant no treatment, relief, support, or hope.

Outsiders were unaware of the incredible challenges Zach and his family faced. The handsome young man did very well in school, he was captain of several sports teams, and, he didn’t complain or ask for help.

Zach, his brother and mother pose and smile in front of flowersAs a teenager, Zach felt he and his family were living in some strange sort of limbo. His brother also developed chronic fatigue. They knew that what they were experiencing wasn’t normal but there was no infrastructure in place to put them on the radar. Zach tried constantly to advocate for his family but was unsuccessful at getting them the care and support they needed.

When Zach was 16, he started experiencing similar symptoms to his mom and younger sibling. He was exhausted, often light-headed, and nauseous. He suffered from debilitating headaches and had trouble concentrating. His athletic abilities declined and his grades dropped. His hands started to tremble. He suffered from depression.

Zach believed he had developed mito. He had not. Zach had a 5.5 cm brain tumour which would be diagnosed three years later.

During the summer following his first year of university, Zach was rushed to a hospital in a major urban centre where he endured a 14-hour surgery to remove the brain tumor. Over the next weeks and months, he fought – and won – many battles. He had to learn to walk and talk again. He needed to regain the 30 pounds and the significant athletic muscle he’d lost. He was not the same person.

You’d think this experience would dampen his spirits but Zach says, “I felt like I was handed this golden opportunity. The monkey on my back was gone. I needed to start from ground zero but I was healthy for the first time in my life. I knew that I was capable of so much and would not only beat this but live to help others.”

And, helping others is just what Zach is doing as the newest addition to MitoCanada’s board of directors. He says he’s excited to be part of the mito community and eager to help the organization grow, increase awareness of the challenges mito patients face every day, and improve the lives of people living with mito.

This has already started with his mom and brother, who were finally diagnosed with mito. Zach supports them both. His brother is going to university. It is a slow process as he needs special accommodations such as extra time for exams, flexible deadlines, and time to rest when his muscles are weak. Zach says his brother is smart and determined but reluctantly accepts that he will need to find a non-conventional way to live as the traditional 9 to 5 routine is not an option. Zach’s brother also accepts that the individual he chooses to share his life with will also share some of his limitations.

“I am so thankful that my journey had an end date,” asserts Zach. “I am able to function way above normal and now I can give back to others.”  While his family used to struggle with feelings of isolation and hopelessness, Zach says, “my experience has motivated us all to find solutions. My commitment to MitoCanada will help us uncover those solutions.”

Determined to help create a world where there are treatments that can help everyone with mito, Zach wants the mito community to be healthier so they have the strength to complete the education they need to contribute, work to support themselves, and enjoy life.

Zach’s family continues to search for therapies that will resolve their symptoms. They both take a mito cocktail, exercise when they can, and are involved in a couple of clinical trials.

Zach remembers what it was like to go undiagnosed. “The affects of my illness will stay with me for the rest of my life,” he says. “It still makes me angry and anxious when I reflect back on the time my health concerns were ignored and I was labeled by teachers and coaches as lazy and wasting my talent and potential.”

Zach asserts that when you can’t advocate for yourself, you get left behind.

He wonders how those with less ability, knowledge and support than his strong and clever mother can be expected to advocate for themselves. He sympathizes for those who know they are capable of so much but are held back by something they can’t control.

As a former patient and patient advocate, Zach says that people need to keep telling their stories. He also emphasized that healthcare professionals need to truly listen to what patients have to say and empathize rather then jumping to a diagnosis before having the full picture.

Today, as a litigation lawyer, Zach proudly advocates for others. He says he wants to help those with mito regain –or experience for the first time –the ability to exercise their intellect, capitalize on their creativity, and feel like they can live healthy, fulsome lives.

While we are truly sorry that Zach and his family have been through so much, we are excited and thankful that this incredible survivor has chosen to share his passion, compassion, expertise and energy with MitoCanada.

© MitoCanada 2022. Shared with permission. Not for reuse or adaptation without consent.

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