We shared this story in our last BLOOM e-letter about an innovative company in Victoria, B.C. that's blurring the line between prosthetics and design with these stylish covers. Avis Favaro, medical correspondent at CTV National News, says she saw our story and followed up with this broadcast piece. Click above and check out these funky limb covers live.
It seemed to come out of nowhere. Only in retrospect, Andrew Sedmihradsky says, did the signs of his son's disease become clear. It started after Max (in cargo bike above) learned to walk. Andrew, along with his wife, Kerri, noticed their son would fall often—and hard. Still, being first-time parents, initially, they didn’t worry. The falls didn’t stop, so the pair took Max to see a few different doctors. But when none of the professionals seemed too anxious about their son’s tumbles, the couple, who lived in Australia at the time, decided not to overthink the situation.
Then, in June of 2013, a daycare worker who had noticed Max’s lack of balance approached the family, insisting they bring the youngster to a doctor one more time. Soon after, Andrew took a few hours off work to bring his son in for an appointment with a pediatrician. Even that day, he felt unconcerned. We’ll get this over with, then do something fun for the rest of afternoon, he remembers thinking.
But after examining Max, the doctor quickly suggested the boy may have muscular dystrophy. The family was referred to a nearby hospital, and a few days later, a blood test confirmed the Andrew and Kerri’s worst fears: Max had Duchenne muscular dystrophy.
Duchenne is a life-limiting genetic disorder that causes muscle weakness because the body can’t make a protein called dystrophin. Duchenne weakens the legs and hips, and eventually the heart and breathing muscles.
“It was just devastating. It was impossible to sleep,” Andrew says “We had to listen to podcasts just to take our minds off of what was happening.” For a while the couple felt inert with shock, anxiety, grief. Finally, sick of feeling helpless, Andrew insisted the family get out and do something fun. They went to a museum in Melbourne. It felt good to get out of the house.
“All we’d done up to that point was wait” Andrew says. “Although it hadn’t been very long, I felt it was important to get up and fight this.”
Last year, since moving to Canada, the clan started Max’s Big Ride, a charity bike ride to raise money and awareness for Duchenne. All proceeds go to Jesse’s Journey, a registered organization committed to finding a cure for the disease.
For the past two summers, Andrew has steered a carrier bike (with Max—now five years old— in the front car, naturally) 600 km from Ottawa to their current hometown, Hamilton, Ont. Kerri, Andrew's parents and Max’s baby sister, Isla, have followed along in a van, delivering food and drinks, providing emotional support, and sorting out accommodations.
The family has also hosted Max’s Big Climb, a competition where professional cyclists collect sponsorship and race up a steep hill in Dundas, Ont.
Together, both events have garnered donations from places like France, Japan, the States and the U.K., and so far, the family has raised upwards of $100,000. They’ve also attracted the attention of a few prominent Canadians: recently, Max received a letter from Prime Minister Justin Trudeau, and this summer, he met with Toronto Mayor John Tory.
“It seems a bit surreal,” Andrew says. “Last year I created a website for Max’s Big Ride in my basement. I wasn’t sure if it would take off. And now the leader of our country knows about it.”
Andrew says the event was inspired by the bike rides the family used to take when they lived in Australia. Max loved sitting close to his father as he pedalled around. A long ride seemed like the perfect way to get attention for Duchenne, while providing ample time together. They keep each other company on the road, Andrew telling stories and Max talking about his hopes for the future (he says, for example, that he wants to start a band with his family).
On top of successfully raising money, Andrew says he’s found comfort and hope along the road. As they pass through cities, they’re regularly greeted by fire departments or groups of volunteers. Sometimes, they’re given food or other gifts—everyone wants to chip in. Most inspiring is when Andrew meets parents whose own children have muscular dystrophy. Often, he says, they insist on donating to Max’s ride.
Since the past two rides have been such positive experiences, Andrew says he hopes to do another next year to continue getting their message out. In particular, he hopes to get the attention of more politicians. As more experimental drugs become available, he says, families will need government support to cover costs.
***
While Andrew and Kerri are educating Canadians about Duchenne muscular dystrophy, they’ve yet to talk to Max about his disease.
Max knows his muscles are weaker than other kids,’ Andrew says, and that’s why he takes medication. But he hasn’t asked about an underlying cause.
They've decided to cross that bridge when they come to it. It’s an attitude Andrew tries to apply broadly while parenting a child with disabilities. “I try not to think about the worst-case scenerio, or fantasize about the best-case scenario,” he says.
He recommends that parents whose children have disabilities give themselves breaks, and that they reach out to others for support whenever possible. For him, the key to staying hopeful while continuing to address the difficult realities is to take things one day at a time. “I try to focus on the here and now, because that’s what I have the power to change.”
I think that there’s hope,” he says. “I wouldn't be doing this if there wasn’t.” Follow Max's family on their blog.
Last night I saw a social media link to a story that included photos of people killed in recent mass shootings. I clicked on it, thinking for a second that it might include photos of the 19 adults killed in a Tokyo home for people with multiple disabilities while they slept in the early hours of Tuesday Tokyo time. It didn't. A quick search showed that when 49 people were killed in a gay nightclub in Orlando on June 12, their photos, names and details about who they were as people, appeared in media two days later. Do you think there's a news outlet that covered the Tokyo massacre that has attempted to secure photos of the victims as a way of telling their stories? I don't think so. To be honest, the social and mainstream media reaction to the deaths has been muted relative to coverage of other mass killings. Yesterday, science writer Emily Willingham suggested why that might be the case in this Forbes piece: This Is What Disability Erasure Looks Like. Willingham notes that the suspect, who had worked for years at the home he targeted, made no secret of what he intended to do, even warning the country's parliament back in February.
"I envision a world where a person with multiple disabilities can be euthanized," he wrote, outlining his plans to "wipe out 470 disabled" people at night time, when staffing was low. He tried to pass the letter to the speaker of the lower house of Japan's parliament and was hospitalized for two weeks as a result.
But the facility that housed the vulnerable people he threatened to kill, Willingham says, appears to have not been adequately warned and prepared. "What if his letter had instead referenced his intention to kill children or teachers or restaurant-goers?" she asks. "I'm guessing that authorities would have paid a lot more attention to it." The reason, she suggests, is that as a culture we are quick to accept messages that suggest people with disabilities are less than human. Messages such as: "Better dead than disabled." The reason we post photos and tell stories of innocent people killed in massacres like this is to assert their humanity. I wonder how far news outlets will go to do that in this case? I, for one, am waiting.
By Louise Kinross A team of scientists at Holland Bloorview, CAMH and SickKids have found similar changes in white matter in the brains of children with autism, attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD). In a study of 200 children with autism, ADHD, OCD or no diagnosis, the researchers found impairments in white matter in the corpus callosum in the children with autism, ADHD or OCD. The corpus callosum connects the right and left hemispheres. The study was published this month in the American Journal of Psychiatry. This CAMH news release gives an excellent overview of the study.
More severe changes were found in the children with autism and ADHD, which are thought to have an earlier onset. The findings are important "because they tell us that these different disorders share brain biology," says senior author Dr. Evdokia Anagnostou, a neurologist and clinician scientist at Holland Bloorview who is head of the Province of Ontario Neurodevelomental Disorders Network (POND).
Historically autism, ADHD and OCD have been treated as different disorders, but POND is studying them collectively. This research used POND's magnetic resonance imaging data. "The more we understand about the shared biology, the more effective treatments we can develop for common problems," Evdokia says.
This adorable child is Scarlett, 7, who has cerebral palsy and is wearing a personal floatation device at her cottage. You may have seen our new care tip column in the last BLOOM e-letter. This is the first care tip on our blog.
Care tip: Water safety for kids
Summer is in full swing, and for many families that means time in the water—swimming, boating and playing. A 2016 study by the Drowning Prevention Research Centre in Canada found that drowning is the second leading cause of preventable death for kids under age 10. Registering your child for swimming lessons is the first step to safety. Another safe water practice is to have your child wear a lifejacket or personal floatation device (PFD). If the jacket can slip over your child’s chin and ears, it’s too big. Check out these tips from the Canadian Red Cross on getting the right fit. PFDs and lifejackets save lives.
Submitted by Krysta Pigden, Aquatic Program Assistant, Holland Bloorview Got an idea for a care tip? Send it to lkinross@hollandbloorview.ca. Sign up to get our monthly BLOOM e-letter or visit us on Facebook.
In April we told you about Kevan Chandler, who was planning a summer trip across Europe with friends who would carry him on their backs when places didn't accommodate his chair.
The itinerary included hopping over stiles in the British countryside, climbing up 600 rock steps to an Irish monastery, and checking out the underground cemetery in Paris.
Kevan and his friends raised over $26,000 to fund their adventure, and purchased a child carrier modified for Kevan's size. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy. He updated us in this e-mail interview.
BLOOM: How did the trip go overall?
Kevan Chandler: Oh, it was awesome! Things went smoother than we could've imagined, but it was also balanced with enough challenges and 'wrenches' to keep us on our toes.
BLOOM: What was your favourite part of the trip? Kevan Chandler: There were so many unbelievable parts to the trip, and I had really special moments with each of the guys who carried me. On one of my favourite days, a few of us went out walking through the fields and woods outside Westerham, in England. Our host, Mike, led the way and even carried me for a bit. The countryside was beautiful and it was exactly the sight that I'd seen a thousand times in films or from my van on the highway, and always dreamed of exploring myself. So, this was an especially precious experience to me. BLOOM: Did you run into any problems while being carried? Kevan Chandler: The gates at the subway were a bit thin, so we had to watch my knees. And we had to be careful at doorways. When we'd hop a fence in the countryside, the guys had to remember they were a bit top-heavy. There were challenges every day, whether we were in the city or out in the country or staying home. Some of them we saw coming, some caught us by surprise, but we just crossed each bridge as we came to them. That was one of the things I considered in choosing the group that came, not that we'd have everything figured out beforehand but that we could be creative and work together to figure things out on the spot. BLOOM: How did the pack that you were using hold up? Was it comfortable for you and your friend? Kevan Chandler: The pack worked great. We made more modifications as we went along, but it was a good, sturdy apparatus and did its job well. BLOOM: What advice would you give others with disability who might want to consider this kind of trip with friends? Kevan Chandler: It all depends on the person, as to what my advice would be. Generally, I'd say to seriously consider yourself and your team, and decide together how to go about the adventure. A backpack worked for me, but it may be something else for another person. You have to decide first what you want to do, and then go about deciding how you want to do it. Don't be afraid to think outside the box, and if you try something and it's not right, don't be afraid to say no and try something else. BLOOM: Did anything surprise you about the trip? Kevan Chandler: Everything surprised me about the trip! I made plans and sorted out details, but emotionally and spiritually, I tried very had to go in with no expectations, just see what happens and enjoy the ride. It was definitely a trip in which you had to roll with the punches, go with the flow, but I think that's the best way to have an experience like this. BLOOM: How did people respond to you and your situation? Did you meet any other travellers with disabilities? Kevan Chandler: People were inspired, whether they spoke to us or just watched us from a distance. I think what we were doing was so obvious, they didn't need to know the details to be encouraged by it. I loved being on the subway and seeing someone on the other end of the car glancing at us and seeing a smile come across their face. We made their day without a word, maybe impacted their life more than we know. And sure, we had some people who just looked at us with confusion, or they saw us and went on with their day unaffected, but who knows how or if that image stayed with them. We didn't meet any other travellers, per say, who were disabled, but one of our hosts in England had multiple sclerosis, and we did see others in passing who also had various disabilities. BLOOM: What did your friends who went with you say about the trip? Is it something they'd do again? Kevan Chandler: They loved it! It was funny to me, because they'd thank me over and over for bringing them on the trip. They were physically carrying me, but they saw it as me taking them to Europe, simply because I invited them. This just shows how great they are and how humble. I think they're all up for another trip. BLOOM: Did you film the trip so that you can turn it into a documentary? Kevan Chandler: Yes, we had a film crew of two and they are now working to whittle that 300-some hours of footage down to a 45-minute documentary. We anticipate a spring 2017 release. BLOOM: Is the film your next project or are you involved in something else? Kevan Chandler: I'm pretty hands off with the film. I trust those guys completely with it. For the next few months, I'll be speaking some around the country, and writing a memoir-type novel about the trip. Also, we are working with a few other disabled folks and their families to help them have more freedom to travel as well.
My husband loved this 'We're The Superhumans' ad about the British Paralympics team as well as everyday folks with disability. It was produced by UK broadcaster Channel 4.
I wanted to like it, I really did. But while I got caught up in the Broadway style show and the catchy "Yes I can" cover, something about the "I can do anything" lyrics, when paired with elite athletes as well as regular folks with disabilities, who just happen to be independent, didn't sit right with me.
Most of the adults and children in the ad have amputations and they've adapted by using a different limb or a prosthesis.
This is how a story in Advertising Age described it: "Paralympians make high jumps, score goals, lift barbells and shoot arrows while everyday folks pump gas, take notes, eat cereals, fly airplanes -- just as easily as their counterparts who happen to have arms and legs would."
Is that statement true?
Is it "as easy" to do competitive sports and everyday activities with a disability as without one? Isn't that a ludicrous over-generalization? And just how are we defining "disability?"
One of the everyday Superhumans featured is Jessica Cox, the first armless pilot who flies with her feet on the controls (she's an American, by the way). She's able to fly the plane with her feet because her physical disability is singular -- she was born without arms. What if she also had low or high muscle tone that limited use of her feet, or chronic pain, or an intellectual disability? Would flying be so "easy" then?
What kind of expectations does this ad set for all people with disabilities, including those with multiple disabilities? The ad suggests that disabled people can do anything AND that they can do it on their own. All of the everyday Superhumans act independently. Most have amputations, and we see how they play a guitar, steer a car, drive a plane, care for a child and pump gas with their feet.
What about people who have conditions that affect many parts of the body and their ability to function? What about people who require help with bathing, dressing, toileting, moving in their wheelchair or communicating? What about people who require round-the-clock care? How do they fit into this "I can do anything" realm?
They don't. That's why they don't appear in the ad.
"Being a Superhuman is a state of mind," says the ad's creative director. "It's time to stop focusing on disability and focus on superability instead."
What? Is a physical environment designed for bipeds and not wheelchairs or walkers a "state of mind" on the part of the disabled person? Are unconscious biases against disabled children detected during implicit association testing in adults a "state of mind" in the children? What about North American health protocols (I imagine they're the same in Europe) that bar children and adults with disabilities from admission to intensive care during a pandemic?
Disabled people have historically been stereotyped as "less than" human. This ad, pairing some of Britain's finest athletes with everyday disabled folk who are independent, suggests they are Superhuman.
Will people with disabilities ever be allowed to just be human, in its full spectrum, which includes different degrees of interdependence and dependence over a lifetime?
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