Wednesday, January 28, 2015

A deadly disease takes a family captive

By Marcy White

I hate Pelizaeus-Merzbacher disease (PMD).

On March 21, 2003, I was told that PMD was the cause of my son Jacob’s many medical problems. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two months ago because the disease had so weakened his immune system that a cold required him to have mechanical assistance to stay alive, my hate relationship was in full swing.

These days, I can’t think of PMD without my heart twisting with loathing. This is hate to the extreme. When Jake was hospitalized for the first three months of his life, I repeatedly said it wasn’t fair. Why was he, an innocent newborn with a whole life of possibilities ahead of him, suffering such excruciating pain and struggling so hard to breathe? It didn’t take long for me to realize that the saying “life isn’t fair”often used half-heartedly by my parents when I complained as a teen about not being allowed to go to a party with friendsis 100 per cent accurate. Life isn’t fair and my son’s disease is proof of it.

Life’s cruelty and my abhorrence of PMD crashed into our house when I had to explain to my twin daughters that Jake’s PMD was worsening.

The fact that Jacob has PMD is wrong. The rapid change in his health is completely undeserved. And the fact that Jamie and Sierra have to experience all this, alongside their brother, is unreasonable in its heartlessness. At ten years old, Jamie and Sierra are forced to witness this injustice every day.

When Sierra and Jamie were six years old, they gave their friends an impromptu genetics lesson by explaining the inheritance pattern of the disease that affects their big brother. They’ve always known that Jacob’s care is difficult and there are nurses in his room every night to ensure his medical safety. But until recently, they didn’t realize that PMD is a fatal disease and that despite our efforts at researching a cure, their brother might not live long enough to benefit from medical breakthroughs.

I’ve learned that people adapt to changing conditions. I remember saying that I wouldn’t be able to stick a tube down my son’s throat and suction out the mucous that was blocking his airway and causing him to turn blue. Now, I do this every day and my hands remain surprisingly steady during the process. When Jamie used to hear the rumble of the suction machine, she would stop what she was doing and put her hands over her ears to block out the awful sound. But, last week, as I was threading the tube down Jake’s airway, Jamie held her brother’s hand and talked him through the entire procedure, even wiping away the tears that pooled at the edges of his eyes. There was so much injustice in that scene, but also a ton of love.

My daughters experience things on a daily basis that youngsters should not have to bear, and that is deplorably unfair. They are aware of the frailty of their brother’s lungs, they know how to read his oxygen monitors and understand what numbers indicate a dangerously high heart rate. They dissolve into tears when he needs to go to the emergency room because, in their experience, that is the start of a long hospitalization and a complete disruption of their lives.

Caring for Jacob is extremely challenging and scary at times. He can go from breathing quietly to sounding like he is drowning in his saliva in seconds. The level of oxygen in his blood can plummet from a safe 98 per cent to a dangerously low 77 per cent in the blink of an eye. The doctors and nurse practitioners have taught me how to care for him and when to intervene. So for the most part, I know how to “manage” my son’s precarious medical needs. I don’t like it, but I am adjusting to the new level of care that Jacob requires.

Late at night, when the house is quiet, save for the humming of the oxygen concentrator in Jake’s room, what keeps me awake is thinking about how PMD is affecting my twin daughters.

Prior to their births, I read a lot about siblings of kids with special needs. Everything I came across consistently stated that kids raised in homes with atypical children grew into empathic, sensitive and caring adults. I do believe that, and have already witnessed several examples of my daughters’ concern for the feelings of their friends. They display a level of compassion beyond their years.

Sierra and Jamie are forced to cope with things many adults are unable to fathom. My heart shatters when they come home from school crying because their friends don’t understand what it’s like to live with a disabled brother whose health is so fragile. I have to explain that most of their friends aren’t emotionally equipped to support them as they express their fears. And that, too, isn’t fair.

How do I hold it together when they ask questions like “Why doesn’t home feel like home anymore?” or “Why does my life have to be harder than everyone else’s at school?” or “Will a cure for PMD be discovered in time for Jake?”

These are questions about which little kids shouldn’t have to wonder, and issues from which I desperately wish I could shield my daughters. But I can’t. So we talk. In the car, on our way to an activity, we talk about why we don’t travel like their friends’ families. And at dinner, we talk about whether the auditorium where the girls are performing in a play is wheelchair accessible so Jacob can come and watch. And late at night, in the darkness of their rooms, we chat about how unfair it is that their brother has PMD, that he can’t tell us exactly what he’s thinking or feeling and that they are scared to be alone with him in case he stops breathing.

We love Jacob with every fibre of our beings. But we hate PMD.

This piece originally appeared in Her Magazine. You can follow Marcy White on her blog Cure PMD or read her book The Boy Who Can.


Tuesday, January 27, 2015

Why your kid's sniffles make me sweat

By Jennifer Philp Zakic

I have a confession: whenever I enter a new place, I scan the room for signs of infection. I look for runny noses, speculate about whether the cough I hear is a “real” cough, and ask people “Do you currently have, or are you getting over, a respiratory virus?”

When I walk into a grocery store, I cringe at the thought of using a cart. I have learned to take Lysol wipes with me everywhere, and this eases my concerns, albeit ever so slightly. I always have a bottle of hand sanitizer near me, and I put it on about every seven minutes when I’m outside the home. I feel explosions of relief in the pit of my throat whenever a friend cancels on me because they suspect a cold is coming on. I rarely go to parties anymore. If I do, I’m the weird girl in the corner who only talks to people she’s known for at least 10 years.

By nature, I’m not a paranoid person. I’m not even a shy person. I have no definitive phobias toward germs. In fact, I’m usually the one who pulls the mystery food out of the fridge at work.

I am simply trying to protect my son, Branko (above right, with sister Nina). His last respiratory infection occurred in August, and it was, not to sound technical, a real doozy. His lungs were so full of junk that he was intubated for a week. It would be really wonderful to never have that happen again.

Our son, Branko, has a complicated medical history. Depending on your proximity to the world of special-needs parenting, his condition would either scare the pants off you, or not shock you in the slightest. He has skeletal dysplasia, caused by a chromosome 12 microdeletion, which affects pretty much every bone in his body. However, the only life-threatening aspect of this condition relates to how his ribs have grown. Funny. They have grown very funny. And small.

To sum it up in the simplest of terms: small ribs = small lungs. The actual cells and alveoli function beautifully but those pesky, funny ribs are restricting the movement of the lungs. As a result, he has spent an extraordinary amount of time in an ICU bed. He has had two unplanned intubations. Oh yeah, almost forgot, his heart stopped for five minutes one time because he had a Rhinovirus, aka The Common Cold.

For strangers or people I haven’t seen in a while, attempting to condense the summary I’ve just given is hard. It’s hard to accurately convey the severity of his situation. I either provide way too much detail—and watch as my listener’s eyes glaze over—or I don’t give enough, and I look like an overbearing and paranoid parent. I would hate to think that people assume I’m avoiding germs just to escape the inconvenience of a runny nose and a lost night of sleep.

Since his last respiratory infection in August, we've kept Branko in quarantine. He just had his first playdate in five months. He rarely sees other children now, and when he does, it will be a one-on-one playdate. It was a difficult decision to make, because he has always had some degree of social anxiety. I feel incredibly guilty for adding fuel to that fire.

At first, we tried to keep going on with our lives as if everything was normal, but this attitude led to some tricky situations. At the park, a friend’s sick child excitedly ran up to Branko’s stroller to say hello. At a birthday party, a friend-of-a-friend casually mentioned that her daughter, who was sitting right beside Branko, had been sick for three weeks.

We quickly realized that most parents have no problem sending their children out into the world with a cold. In an effort to kill hundreds of birds with one stone, we used social media to tell our story. It only took one Facebook post to make people understand that yes, we might run away from you if we see you at the store, and no, it wasn’t anything you did. And it worked. I realized that the people in our lives—friends, acquaintances, friends from former lives—were all really wonderful people. Now they understood. They hadn’t been through it themselves, but they got it.

There are a lot of things we don’t do anymore. We don’t go to birthday parties. We don’t go to the museum. My husband and I avoid crowded places, especially with people who aren’t aware of our situation. And did I mention the hand sanitizer? I own plenty of hand sanitizer.

But Branko still does so much. We have turned his weekly hospital appointments into an adventure. It’s not just a car any more, it’s a safari ride blasting all of his favourite songs. As an exclusive treat, we let him use the iPad in the waiting room, and I’ll admit, those days usually end with a trip to the toy store.

And sometimes, one of us will take him shopping so that the other parent can simply have some peace and quiet. We take him to larger, open, less crowded stores with the idea that fewer people and more space might reduce our proximity to viruses. We keep him busy at home. We reach out to other people when things get tough. We understand the importance of having time to ourselves, without our children. We complain. Some days are darker than others. There are days when I have no idea how long the TV has been on, and other days where I don’t turn it on at all.

Some days, I am swimming in fear. I try not to get angry when we visit the hospital for Branko’s monthly RSV vaccination. It’s in a very unfortunate location, right next to the children’s walk-in clinic. I try not to be angry with the parent who lets her sick toddler run up to our stroller—the blue one with the sickly looking boy attached to a portable oxygen machine. I try to keep my cool, but it’s really hard.

This past weekend, Branko’s dad took him to his first playdate since August, with one of our oldest and dearest friends. For the first 30 minutes, Branko had a meltdown. He clutched onto his dad’s neck and begged to go home. His little friend was determined to snap him out of it, hiding and reappearing from underneath the furniture. After a few minutes, Branko was laughing. My husband sent me a picture of the two boys playing together on the floor. I exhaled deeply when I saw the picture: this was Branko, being just fine, in a non-quarantined world. I saw a glimpse at our possible future.

We have a difficult decision to make, and that’s when to lift our quarantine, since Branko is eligible to attend Kindergarten in the fall. I often wish that parents of medically fragile kids could look into a crystal ball, or at least have the superpower to see viruses with the naked eye. Until this is possible, I guess I will continue to be the weird girl at the party, scanning the room for runny noses and speaking to a scant handful of people. Please don’t be offended.

Please follow Jennifer Philp Zakic on her blog
Branko Has Funny Bones.

Monday, January 26, 2015

Want to know what kids think? Just ask

By Louise Kinross

Tommy (in orange shirt) and Martin Tobon (foreground) are nine-year-old twins.

Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”

The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.

“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks softly and with effort due to his cerebral palsy. “The hoop in the gym is too high.”

“That’s right,” Martin says. “He wants different sizes for different kids who can’t shoot that high.”

Tommy also found the water table in the Ronald McDonald Playroom didn’t work for him. Because he uses a wheelchair, he couldn’t get up close enough to play.

The boys shared their ideas as part of the hospital’s children’s advisory council and say they’re pleased with the changes they’ve seen.

For example, there’s a new water table in the playroom that’s accessible so Tommy can wheel under it and play at his height. “We also wanted a place to hear music by ourselves or play games or on the iPad” Martin says, and voila—there’s now a dedicated space for these activities called the teen corner.

The group of 20 child advisors, which includes patients and their siblings, is led by Daniel Scott, Holland Bloorview’s outpatient playroom coordinator.

“It’s so important for kids to know their voice matters,” Daniel says. “We want to give them opportunities to give feedback in ways that are meaningful to them and to the hospital. Children with disabilities will be systematically marginalized for the rest of their lives—so if engaging them in a council helps them become their own advocate that’s an incredible life skill down the road.”

When Daniel launched the children’s advisory three years ago he couldn’t find one targeted to young children. Most hospitals, like Holland Bloorview, had a youth advisory, but participants had to be 13 or older. “The age range we see in a pediatric hospital is broad and to leave children under the age of 13 out of the change process is such a missed opportunity,” he says. “These are children who have been in the system for a while, are here on a regular basis and know it well.”

Holland Bloorview’s children’s advisory council is open to kids aged three to 13, but some children choose to stay on longer.

The council meets on a project basis to consult with hospital and external programs looking for input from this age group.

Its first event was a brainstorm—over pizza—on how to improve the Ronald McDonald playroom, a supervised “play zone” for clients and their brothers and sisters. Some kids filled out a survey or shared ideas verbally. Others were observed playing to see what toys and activities they gravitated towards. Kids could also browse a catalogue of adapted toys and stick a post-it note on items they’d like to see in the playroom. "The toy catalogue captured data from kids who weren't as verbal or who are shy,” Daniel says. “We ended up making a lot of changes, from creating a teen corner, to bringing in materials that made the room more accessible—like a large ramp and stairs to our ball pit so kids get could in and out independently—and getting a wheelchair accessible art easel and sensory table. We also lowered the level of shelving and made it open and at eye level for kids.”

Another event involved having kids try the food served on our inpatient units. This seemed a great idea since kids can be picky eaters. “The food tasted great, but when it was first put in front of them, it wasn't presented in a kid-friendly way,” Daniel says. “For example, one of the children said that the meatballs looked like brains.”

Another client who's lived for many years on our complex-continuing-care unit suggested the food was too bland. As a result, seasonings are now available in the kitchens. "These kids have a lot of their lives dictated to them, so providing as much choice as possible is a great relief," Daniel said. As a way to build the relationship between food services staff and inpatient families, a new Kids In The Kitchen program invites kids to come make their own pizzas, cupcakes or cookies.

They’ve also been consulted on the accessibility of video games. Scientists in the Bloorview Research Institute want to know if therapeutic games they're developing are easy to use and fun, so Martin and Tommy and friends came out for a night of video-game playing (in the photo they're with scientist Elaine Biddiss, right, and their mom Andrea, left).

“Daniel is really good at making the sessions fun—with snacks and activities—and getting their ideas,” says Andrea Davila, Martin and Tommy's mom.

Last year the group was invited to a patient experience conference to describe its role to about 350 people. Tommy and Martin sat on stage with other advisory members and answered questions from the audience.

“This is teaching them skills they'd never learn at school at this age, like being able to talk in front of so many people,” Andrea says. “They're learning to be advocates for themselves, but also to see a bigger picture that benefits other children. I notice they have more confidence when they speak to regular people on the street. And I know they raise their voice a little bit more—especially Tommy because sometimes people can't hear him. That’s something we practise.”

To get involved in the children’s advisory, call Daniel at 416-425-6220, ext. 3438.


Friday, January 23, 2015

How many red flags on mental health do we need?

By Louise Kinross

Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday.

There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low.

There's more than a decade of research showing parents of kids with disabilities have higher rates of stress and depression than parents raising typical kids, as well as poorer physical health (See the bottom of page 4 of this 2013 Australian report for a review on the mental health studies). One study found the level of chronic stress experienced by mothers of youth and adults with autism mirrors that seen in combat soldiers.

The worry is felt by siblings, too. A 2014 study in Pediatrics found that siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems. "Growing up with a child with a disability is a risk factor for mental-health issues," lead investigator Dr. Anthony Goudie told BLOOM.

When a group of Australian researchers were trying to come up with a practical resource to support mental wellbeing in parents of kids with disabilities, they could only find one document online targeted to this population. 

They've since released Wellbeing for Parents and Carers, a resource for parents caring for children and adults with disabilities. It was put together based on interviews with parents.

They identify these ways to help promote mental wellbeing: 

Practise self-care.
Ask yourself 'How am I doing?'
Ask for help.
Try not to be too hard on yourself.
Recognize your achievements.
Plan time for yourself.
Take a break from caring.
Build supportive relationships.
Talk about how you feel.

I know some of these strategies will sound impossible to our readers, especially "practise self-care, plan time for yourself and take a break from caring."

"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less").

I'm tired of reading study after study, year after year, about how parents like us are at risk. We have ENOUGH evidence. In addition to the scientific studies, there are regular news stories about parents who reach breaking point.

The report on Canadian mental-health indicators notes that "caregivers are an invaluable asset to formal health care and social service systems in supporting individuals with physical and/or mental health conditions."

They got that right.

So why isn't there more action on giving parents the respite and supports they need to better take care of themselves? So that they don't become mentally or physically ill?

I know a number of families whose children require the level of care received in an ICU at home. Yet they receive a weekly allotment of nursing care that gives them about six hours a night. Do most of us cope well on six hours of sleep a night? 

When I saw the news story about high stress in Canadian caregivers being flagged as a mental-health concern I felt a rush of excitement. But then I looked back over the years and years of studies related to parenting kids with disabilities. I remember reporting on one of them by our then chief of medical staff back in 2005. And I don't expect any change.

Thursday, January 22, 2015

A brother's story fuels autism researcher

By Louise Kinross

“I sit here and think ‘How did I get so lucky?’” says Susan Day Fragiadakis, a research assistant in Holland Bloorview’s Autism Research Centre.

Susan recruits and assesses children and youth and their families for a study that aims to link genetic changes with specific types of autism and other neurodevelopmental disorders like Down syndrome.

Susan is part of a Province of Ontario Neurodevelopmental Disorders (POND) Network study that follows over 300 children and young adults.

“The goal is to understand how genes and biology affect the brain and behaviour in autism and other neurodevevelopmental disorders,” Susan says. That includes attention deficit hyperactivity disorder, obsessive compulsive disorder and intellectual disability. Participants give a blood sample for genetic analysis; have a brain scan; do interviews and questionnaires; and choose whether they wish to participate in a medication trial.

Susan’s role includes conducting detailed parent interviews that track “everything you could imagine about a child’s history back to birth: sensory issues, anxiety, sleep, eating, medical history.”

Her passion for understanding autism stems from her own family’s experience with incorrect information when her brother Rick was diagnosed in the early 1960s (see Susan top right in photo, with her siblings). 

“My mother was told that Rick’s autism was the result of poor parenting,” Susan says. “The implication was that somehow she had damaged my brother and the only treatment offered was psychotherapy for her. When she pointed out that she had two typically developing kids in the waiting room, the response was ‘but they’re girls.’ The way my mother and father dealt with it was to be an open book—to share our story to move understanding along. My mother wanted to educate people to help the next generation of families.”

Susan’s work on the POND study feels like coming full circle from her family’s experience of being blamed for her brother's autism, she says. “I used to worry about the lack of quality research into autism and now I get to work in a lab led by a child neurologist, a psychologist and an engineer that’s doing quality research that’s going to advance our knowledge and potential interventions.”

Susan has fond memories of her childhood. “When we lived in a small town my sister and I would take Rick on adventures that we didn’t fully explain to my parents. My older sister was the boss and I was the little sister. Rick would go cliff-climbing with us or ride his bike with us out into the country or go to the race track with us.”

Rick never attended school. “In some towns we lived in he went to programs run in church basements by 'the Association for the Mentally Retarded.' But the rest of the time he was with my mother and he liked to help her with cooking and cleaning and doing the laundry.”

In his early teens Rick went to live in an institution. “I feel very guilty about it,” Susan says. “I’ve never talked to my sister about it but I’ve always felt that some of it was that my parents thought it would be the best thing for my sister and me. That’s what they were told. Rick got very sick when he first went. There was a long period of time where we were told that to help him adjust we weren’t allowed to see him. That was hard. I think I blocked out a lot of things I didn’t want to remember.”

As a teenager, Susan worked with other children with disabilities. “My mother volunteered me to babysit for free for a family that had a child with autism. I think I knew I had skills working with individuals with disabilities and their families.”

That led her to study psychology at university. Ironically, Susan did an eight-month clinical master’s placement at the same institution her brother had once lived in. “It was eye-opening,” Susan says. “There’s a reason they were closed. They’re not the ideal setting for most people.”

Rick was one of the first people transitioned back to the community. He now lives in a group home and visits Susan and other family members every two to three weeks. At 60, he loves horse-back riding, sawing wood and fancy restaurants.

After graduating Susan spent decades educating people about autism, most recently at the Geneva Centre for Autism. “What people remember most from my talks is the examples I’ve given of my brother. As a family, we always talk about how Rick has educated two generations of workers. When I did public speaking there was always someone in the audience who knew Rick. One time I was talking about strengths and how just because you can’t talk and didn’t go to school doesn’t mean you don’t have strengths, and a woman in the audience started crying. It turned out she’d done her master’s research on my brother and had interviewed my parents. Rick’s had a huge impact on a whole lot of people’s lives.”

In recruiting families into the POND study, Susan feels she’s enabling youth and families to continue educating professionals. “I was consenting a kid into our study and one of the questions is ‘Why do you want to be in this study?’ This boy said ‘I want to be in the study because I can talk and I can tell you things that those other kids at my school who can’t talk aren’t able to. I’m speaking for them.’”

Growing up, Susan’s family participated in lots of research studies but didn’t typically hear back on the outcome. “I’m proud of the fact that we have annual science days for our POND families and the principal investigators come and explain how they’re using the data. The families are giving us their time, their information, and opening up a lot of stuff for us. We have a responsibility to respect them.”’

Susan believes her experience as a sibling to a brother with autism and as a parent to her own children helps her draw out the information she needs from parents.

She’s excited that the study is leading to practical interventions. For example, scientist Azadeh Kushki is developing an anxiety meter “that gives youth a visual prompt to changes in their heart rate that signal they need to do a calming strategy. This helps because kids with autism have difficulty identifying their symptoms of anxiety. It’s truly a collaborative effort.”

Most kids enjoy participating in the POND study, Susan says. “They’re with people who appreciate them and see their uniqueness as an interesting thing, as opposed to something to be fixed. We meet some of the most amazing kids who daily teach me something new.”

The study is funded through the Ontario Brain Institute until 2018. “It’s such a robust, rich source of information,” Susan says. “I hope we’ll be able to follow some of these kids and their families longitudinally.”

Wednesday, January 21, 2015

Slip slidin' away

By Louise Kinross


The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study published in Disability and Rehabilitation last month.

Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face getting around in winter.

Their comments paint a stark picture:

“In the slush and snow my walker seizes up” explains one participant, who notes that she falls regularly and has broken her leg “more than once.”

From a power wheelchair user: “With public transit sometimes their ramps don’t work…because it’s cold so the hydraulics don’t work…So even if the bus comes, the ramp doesn’t work. So you wait for the next bus. I have times where I waited for four buses.”

Snow-blocked pathways and sidewalks force participants onto the road. One was hit by a car at an intersection when she had to drive on the road because the sidewalk wasn’t plowed.

Most youth can't wear gloves because it impedes their ability to use their walker or wheelchair—so frostbite is a common problem.

One recounted getting stuck on patches of ice and having to wait to ask someone for assistance or call the police. Another was choked when her coat became caught under a wheel.

These extreme conditions led many youth to fear and avoid going out, which made them feel lonely and isolated.

When they did go out, they had to depend more on parents or others to ensure they were safe, whereas in the summer they could go independently.

Participants suggested strategies to help others with mobility devices cope with winter. These included having equipment more frequently maintained to keep it in top working order; paying more attention to conditions of paths and sidewalks and avoiding problem areas; asking a pedestrian about whether a route was hazardous; giving yourself more time to get somewhere; and putting flags and lights on wheelchairs to improve their visibility. To prevent isolation and depression, some participants kept busy in activities like adapted winter or indoor sports. Girls were less likely to participate in adapted sports than boys.

Because heavy winter coats were hard for youth to put on and limited their movement, they suggested wearing layers with a thinner winter coat. Some wore anti-slip boots.

Researchers found that youth with walkers had more serious challenges in the winter than those with wheelchairs, due to smaller wheels on their devices.

Clinicians must ensure youth get proper training on maneuvering their wheelchair or walker, and enlisting mentors may be helpful, researchers said. Expanding clinic times should be considered to recognize the extra time it takes to get to appointments and to leave enough time to assess clients for signs of depression. A winter survival guide could include tips for spotting hazards at street crossings, maintaining wheelchairs, dressing appropriately and recognizing signs of frostbite, as well as a list of adapted local activities.   

Tuesday, January 20, 2015

Acceptance: What does it mean to you?

There is a very cool group called 3E Love Network that promotes acceptance of disability.

Today is their International Day of Acceptance.

The group was founded by siblings Stevie and Annie Hopkins, two young adults with spinal muscular atrophy.

Their message: "tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals, who loves life, and who will not be without a voice in society. You are not living disabled, you are living."

Read Annie Hopkins' powerful story here. Annie grew up facing discrimination. She had a ton of spunk. "In college, she wanted to join a sorority, so she forced more than 40 houses on campus to build ramps so she could participate in rush week," according to the 3E Love website.

Annie created a wheelchair heart symbol to unify people of all abilities and spark conversation that would change attitudes. She and her brother Stevie started a company to spread the message. Unexpectedly, Annie died in 2009 due to a complication from a simple medical procedure. Stevie took the company forward.

To me, acceptance means respect for a person's intrinsic self-worth, their value as a human being, regardless of anything they do.

What does acceptance mean to you?