From life support to learning to live again

Emma wants to be a photographer one day and use a lens to show the world what she sees. 

“It would be cool for others to see the point of view of someone in a wheelchair,” said the 15-year-old who just started high school this year. 

Thanks to your support, Emma’s life is finally in focus.

She’s come such a long way from her first day at Holland Bloorview back in 2012, after having been at Sick Kids for several months which included a short period of time on life support. 

Emma has mitochondrial disease – a chronic, genetic disorder that occurs when the mitochondria of the body’s cells fail to produce enough energy for cell or organ function. She was also diagnosed with autism when she was eight years old. 

When Emma arrived at Holland Bloorview, she couldn’t walk or talk. She couldn’t even breathe or swallow on her own.  

Countless hours of therapy and treatments followed – respiratory therapy, physiotherapy, feeding and swallowing therapy, speech and language pathology and other services.

She vividly remembers the big steps of breathing without a ventilator and being able to eat on her own. 

“Holland Bloorview is where I learned to live again…to speak again, walk again and talk again,” said Emma.  

She’s gone from not being able to say a word, to captivating audiences as a public speaker. As a Holland Bloorview Ambassador, she speaks to schools about her recovery journey and about childhood disability awareness. 

Emma knows the road ahead won’t be easy. It will be strewn with challenges and obstacles. But she’s determined to “become the girl I want to be,” she said. 

That includes growing up, maybe having a family of her own, and following passions like photography. 

When setbacks happen, she finds strength in her family, and takes comfort knowing she has the tireless support of her extended family at Holland Bloorview…and that includes donors like you. 

“Coming back for visits and appointments is really heart-warming because I love the energy around this hospital,” she said. “This is a really powerful place…Holland Bloorview is my second home.”

Nursing kids back to health (and home)

Joy Vergara remembers caring for Emma when she was an inpatient at the hospital’s Complex Continuing Care (CCC) unit. 

“She was a sweet little girl,” she said.

The CCC unit serves children and youth from birth to age 18 with complex medical needs or who have multi-system diseases.

The kids she cares for may be at the hospital a month, or as long as a few years, but most eventually go home.  

Joy spends a lot of her time getting kids ready – ready to return to school, home and the community.

She’s also helps parents learn how to best care for their kids once they’re home. 

She empowers parents with information on how to manage their child’s condition, as well as advice on medication and equipment like ventilators, tracheostomies or feeding pumps.

“I love working with families, you really get to know them,” said Joy, who has been with the CCC unit for 14 years. “We really develop such a unique relationship.”

When the day comes to go home, there’s a mix of emotions. There’s some anxiety and trepidation, but more than anything, there’s enthusiasm. 

That goes for Joy too. 

Emma finds the right words

Sean Peacocke helped Emma say some of her first words after she arrived at Holland Bloorview. 

Sean was Emma’s speech language pathologist and he remembers her determination. 

“She really wanted to talk again and nothing was going to stop her,” he said. 

Sean helped Emma speak through her tracheostomy. It took some practice, but Emma got the hang of it quickly. 

Holland Bloorview’s speech and language services help so many kids like Emma who are determined to communicate. 

Every child’s path to communicating is different. Some kids who couldn’t say anything learn to pronounce a few words. Others advance from a few words to a large vocabulary. 

“Others use different methods besides speech to communicate, like communication signs or devices,” stressed Sean whose had the pleasure of seeing kids turn their determination into an ability to express themselves.

“I’ve seen these children grow up, kids who were seven who are now teenagers and talk to me with confidence,” said Sean, who enjoys any form of chatting with past clients. 

“I’ve also seen Emma grow up, and I only ever hear good things about her…I know she’s giving back to Holland Bloorview.”

Gardening leads to inner-growth

Shannon Crossman remembers bringing one of Emma’s favourite hobbies to her hospital bed. 

Emma loves gardening. She got her green thumb from her grandparents. A few days after Emma arrived, she met with Shannon who is the creative coordinator of the Spiral Garden program. 

Thanks to donor support, the Spiral Garden help kids’ imaginations bloom. 

This popular outdoor art, garden and summer program helps kids let their creativity shine every summer as aspiring artists, sculptors, gardeners, puppeteers, story tellers and theatre performers.

Shannon also makes bedside calls. She remembers visiting Emma in her room and learning about her interests. 

A few days later, she returned and joined Emma in some bedside gardening. Together, they planted seedlings in a small tray, to Emma’s delight. 

“She really needed an outlet that would normalize her experience and remind her of the things she loved to do,” said Shannon. “She could express herself through her hands, and nurture something and see it grow.”

That’s what the Spiral Garden program does – it gives kids an opportunity to reconnect to things they love, and identify with their passions, not just their diagnosis.

Brain research could boost learning

Deryk Beal wants to know exactly what’s happening in kids’ brains when they’re learning to speak. 

The Assistant Professor who joined Holland Bloorview a year ago is a clinician-scientist and a speech language pathologist whose research focus is cognitive neuroimaging – looking at images of the developing brain of kids with disabilities using tools like an MRI scanner (magnetic resonance imaging).

With these images, he can examine the brain’s networks and pathways related to speech and language learning. 

His research team is also exploring “brain stimulation technology.” That involves sending tiny pulses of electric or magnetic energy into specific parts of the brain to trigger, and possibly accelerate learning. 

“We’re extremely excited about this,” he said. “We can use this technology in combination with traditional speech and language therapy,” he said. “Our thinking is that when used in the right way, it can help kids learn more and learn faster.”

Several Holland Bloorview researchers will soon be learning more and learning faster, as the Bloorview Research Institute (BRI) is poised to undergo significant growth in the coming years, thanks to your support.