Childhood apraxia of speech (CAS) is a motor speech disorder with neurological roots. People with CAS know what they want to say but struggle to perform the complex movements required to form speech. Though it starts in childhood, it’s a condition that persists into adulthood. Brooke Rea is a speech-language pathologist (SLP) with a concentration in CAS. She works on the professional advisory committee for Apraxia Kids, an international organization dedicated to apraxia awareness and education. She plays a key role in the Canadian chapter of the nonprofit while also running a speech centre in Guelph.

“Access to appropriate treatment, whether that’s intensity, whether that’s a speech pathologist with the appropriate training, whether it’s the frequency, all of that remains to be very elusive for families,” Rea said. “Many families have access to some kind of employee health benefits, but our insurance companies have not grown or changed those rates reflective of what the industry charges, and so even families who have some funds to access private therapy are not able to access near what is needed.”

The frequency and timing of treatment

As is the case with many childhood disorders, early intervention is essential. The effects of CAS compound with age, and it’s a disorder that requires intensive ongoing therapy to address. Many children with CAS are directed to attend sessions two to three times a week, but some studies suggest that three to five times a week is more in line with client needs.

Accessing appropriate treatment is the number one concern for families across Canada, Rea said. She doesn’t know any children with CAS who get more than three sessions per week. Most families can’t afford more than two sessions a week if they elect to go with private therapy, which is often necessary to get the specialized care they need.

“Most of the students in the Ontario School Board System are getting maybe 12 sessions a year. Some are fewer than that,” she said. “The system is not designed for these kids in any capacity.”

Another systemic flaw affecting people with CAS is the inability of SLPs to make formal diagnoses of speech disorders. In the rest of the country, SLPs can communicate diagnoses directly to their clients. But in Ontario, the Regulated Health Professions Act requires a medical doctor to step in, which can complicate families’ ability to access resources. 

Rea would also love to see an increase in awareness. Some municipalities, like Bracebridge, light up the falls or other local landmarks on the 14th, but she hopes to see more recognition in schools, medical systems and provincial governments. Many people who come into her office have never heard of CAS, but still, great things are happening within the organization. 

“We’ve increased the number of speech pathologists with advanced training with Apraxia Kids, which has been pretty phenomenal,” Rea said. “We have a very large Ontario contingent now of speech pathologists with advanced training.”

More and more local practitioners are seeking training beyond the basics of apraxia treatment and assessment. In addition, Rea said public health institutions, as well as pre-school and school-based speech and language systems, continue to recognize that they don’t meet the needs of kids with CAS. Though the changes have been incremental, things are improving.

Meanwhile, Apraxia Kids Canada has struggled to refine their role in Canada. If they take on charitable status, they won’t be able to provide funding grants for private therapy. Rea and others are working behind the scenes to establish a foundation that will allow them to give direct support to Canadian families who need it.

Reaching a point of resolution

Regardless, the organization continues to provide resources and support to people across Canada. Their website is a robust source of accessible and digestible information for families, professionals and educators. They have a Facebook support group for families, and this year’s conference is fully virtual, offering recordings and live presentations on a wide range of topics.

The prevalence of the disorder remains about one to two people per 1,000. Similarly, the number of people accessing services through Apraxia Kids Canada has held steady. As new families join the community, others reach a point where their children no longer need as much support.

“Our goal is always to get them to a point where, in a day-to-day situation, speaking verbally, you would not notice,” Rea said. “I would say that we’re successful in that goal frequently, often when those kids have been identified early, they’ve received regular, intensive and appropriate therapy, and other factors with respect to prognosis have been well aligned.” 

Other factors include things like cognitive impairments or other medical issues. For children who are generally healthy and able to attend therapy, they’ll likely be able to get to a point of resolved CAS where their condition isn’t noticeable.

When children are diagnosed, their parents often wonder if they’ll ever be able to speak. Rea has been in a position to see many families move on to questions about whether their children will ever stop talking. She said they often joke within the community that apraxia parents are the only ones to be thrilled when their children get in trouble for talking in school.

Many families put other aspects of life on hold to pursue the rigorous therapy schedule required. It’s costly, both in time and money, so seeing progress serves as proof that they did it all for a reason.

“It’s that reassurance that they did the right thing, and the exhaustion and the advocating and the arguing and the fighting that they’ve had to do for their child’s voice was worth it,” Rea said. “Progress is everything.”

Bracebridge resident Jody Hamilton knows how gratifying it is to see that growth. Her son Nash, now nine years old, was diagnosed with CAS at age two. He started with communicating one or two words at a time, but now, he can speak in full sentences of 20 words or more.

“Anybody who hasn’t seen him in a year or two has said, ‘Oh my gosh, his speech has improved so much,’” Jody said. “He’s doing well. Speech can be challenging for him because he has to work at it, but he continues to improve.”

Navigating treatment and childhood

Nash is still working on the clarity of his speech, but he’s taken leaps and bounds in communicating. He used to rely on an iPad, which acts as an augmentative and alternative communication (AAC) device, to speak. 

These days, he talks on his own, and his iPad serves as a way to refine his reading and writing skills. He uses it while taking spelling tests or reading paragraphs for class.

“As his needs grow, the AAC device grows,” she said.

In many ways, Nash is an average third grader. He loves fishing, going to the trailer and cottage with family, and spending time with his mom. He plays rep basketball, and his team recently took home bronze in their final competition weekend. 

In school, he loves learning about language despite his own communication challenges. He also enjoys math and, like many others his age, recess. He doesn’t always want to go to speech sessions, especially because he has so much fun in regular school, but he often enjoys it once he’s there. 

He’s looking forward to Apraxia Awareness Day and has advice for people interacting with those who have CAS.

“They should understand when they know that they have apraxia, you should give them time to think about things,” he said, “and you should give them time to say words and try to sound out the words.”

Thanks in part to his mom’s advocacy efforts, Nash and his family have a network of other apraxia families in the area. They regularly reach out to the other three families, who all have children near Nash’s age that have developed friendships.

“It feels good for me because they know what it feels like,” Nash said.

Jody said life is busy now that their children are in sports alongside their speech therapy and other commitments. Still, it’s nice to have people with a similar perspective and experience to rely on. They’re meeting at the falls on Wednesday to celebrate the awareness anniversary.

“We usually meet on Apraxia Day, which is awesome,” she said. “Whenever we need each other, we lean on each other.”

On top of the local connections they’ve built, Apraxia Kids has been a good support system that offers different resources and a sense of community. Jody works as a moderator for the Apraxia Kids Canada Facebook group in addition to her local awareness efforts.

She also works hard to make sure Nash understands the reasons behind all of the work. As a nine-year-old, he has many other things he’d like to spend his time doing, so she helps show him parts of the journey he can’t necessarily remember.

“He’s put in lots of work. I mean, so have I,” Jody said. “Even though sometimes he doesn’t love going to speech, we have a conversation. I’ll show him videos of what he sounded like when he was two, and then I’ll say, ‘Look at how far you’ve come.’”

It’s been an emotional journey for the two of them. Speech is expensive, and the need for greater funding and resources remains. Nevertheless, apraxia families and practitioners make it work, even in small towns like Bracebridge.

Jody has spent years advocating for her son, speaking in schools and raising awareness in as many ways as possible. She aims to help families who are new to the diagnosis and be there for others who are in the thick of the process. She welcomes apraxia families to join the community both online and in person.

“If families are out there and need some guidance, reach out to the apraxia world and reach out to me.”

To learn more about CAS, visit the Apraxia Kids website.

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Childhood apraxia of speech (CAS) is a motor speech disorder where people struggle to form words despite knowing what they want to say. Though CAS is specific to children, apraxia can affect people of all ages, and it’s not something that kids outgrow. People with apraxia often work with speech-language pathologists and other professionals to improve the clarity of their speech. Bracebridge resident Jody Hamilton has been explaining the disorder in assemblies, to teachers and doctors, and in various social settings for years since her son Nash was diagnosed.

“Apraxia is when the communication from your brain to your mouth isn’t fully connected,” Jody said. “Nash has a hard time talking, so he has to train his brain to be able to talk so people can understand him.”

When Nash was first diagnosed, Jody had never heard of apraxia. She didn’t know how much he would be able to talk, if he could talk at all, and she feared what it would mean for his comprehension. Once she learned more, she found that Nash and other children with apraxia often have a good understanding of language, but they struggle to create the sounds and movements required for clear speech.

Since then, she’s been immensely proud to see his progress. He went from being nonverbal at age four to talking in 20-word sentences at age eight. Now that he’s older, he’s starting to explain apraxia to others and ask for what he needs.

“He knows what it is and understands it,” she said. “He’s starting to advocate for himself rather than me having to do it.”

The main thing he wants people to know about talking to someone with apraxia is that they may need more time to express themselves. As he finds his voice, Jody will continue to work hard on behalf of her son and others with CAS. 

On top of speaking in schools, she has worked with Apraxia Kids Canada and led the charge to raise local awareness. She wants the absolute best for her son, and on top of that, spreading awareness helps create better understanding for all people with speech delays. It also gives hope to other families who might feel lost or alone as they navigate apraxia. 

Nash has been at the same school for a few years now, so most people know about apraxia thanks to the annual awareness campaign. A few other students at the school have CAS, which has been a great bonding experience for the kids and their families.

“It feels good to have friends like me,” Nash said. 

Jody invites members of the community to wear blue on May 14 in honour of Nash and other local apraxia stars, like his friends Andrew and Kensley. Though each of them has had unique triumphs and challenges in their speech journey, the three of them share a lot in common. They all struggled with key milestones, they each spent time at One Kids Place for therapy, and they’ve all encountered a similar lack of knowledge.

“[My husband Mike and I] went through quite a few professionals,” said Huntsville resident Martina McCann. “Some had never even heard of apraxia, others knew very little and didn’t feel confident in diagnosing it. There was also a dispute on who was capable of actually writing a diagnosis for it.”

Ultimately, the McCanns were able to get a diagnosis for their son Andrew last year. Like Jody, they had never heard of apraxia, and hearing that it was a rare diagnosis made them feel alone. Martina said she’s over the moon to see Andrew, who is seven years old, now connecting with other children who have the condition. 

Spending time with Kensley and Nash has shown him that he’s not alone in his struggles, and the same goes for their parents. The McCanns see May 14 as a day not only to raise awareness but also to celebrate all the hard work and progress that Andrew and his friends have made.

“I feel so fortunate to have met both of these families,” Martina said. “They have both helped us navigate our journey thus far. Knowing that you are not alone in this fight is immeasurable.”

Huntsville resident Sarah Hopkins, mother of eight-year-old Kensley, feels the same way.

“I know that any one of us will help each other advocate, give us guidance, recommend services that will benefit our children,” she said. “Although there are times we don’t see each other, our community is a family. We will always have each other’s back.”

Sarah first met Jody after reading a previous article about her advocacy efforts. She didn’t know any other local families that had children with apraxia, and they hit it off immediately. She said Jody has taught her so much, and she was equally thrilled to meet the McCanns last year.

No two children are the same, but because they understand each other’s struggles, talking isn’t always necessary for Kensley, Nash and Andrew. Sarah said it’s wonderful as a parent to see them interact, and she’s looking forward to celebrating them and their connection on Apraxia Awareness Day.

“Honestly, for our family, May 14 is the best day to raise our voice for those who can’t,” Sarah said, adding that it’s a chance to spread both gratitude and education. “Educating and making people aware of apraxia helps others be more accepting of this diagnosis but also helps other parents who may be afraid to come forward and ask for help.”

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Childhood apraxia of speech (CAS) is a rare neurological disorder that affects a child’s ability to speak. People with apraxia know what they want to say but struggle to perform the complex movements required to form words. It’s a condition that persists into adulthood and requires extensive therapy to address. May is Apraxia Awareness Month and on May 14, supporters will wear blue and landmarks like the Bracebridge Falls will bask in blue light to raise awareness and funding for the disorder. 

“[Nash] communicates very differently, but that’s okay. He really shouldn’t be treated any differently,” Jody said. “Everybody should be inclusive, and if they’re not quite sure about what to do or how to act, ask somebody and educate yourself.”

Jody initially thought her son Nash was just a calm and quiet baby, but eventually, she noticed that he wasn’t reaching the same speech milestones as other children his age. After consulting with his doctors, they were referred to the children’s healthcare centre One Kids Place where he was diagnosed with CAS at two years and eight months.

Now, Nash is seven years old and in Grade 1. He continues to do speech therapy and works on his speech at school for 20 minutes every day.

“He’s definitely come a long way,” Jody said. “He’s talking in probably about eight- to ten-word sentences now. Depending on if someone is familiar with him or not, he’s kind of anywhere between 30 and 60 per cent intelligible.”

The transition from senior kindergarten to Grade 1 meant moving away from play-based learning. The greater emphasis on reading and writing skills has posed a challenge for Nash, she said. Like most children, Nash tries to work out spelling by sounding out words, but due to his apraxia, certain sounds can get lost in translation.

If he tries to say dog, for example, he often says “dod” instead. He knows the word ends in a G, but because he struggles to pronounce it, he will sometimes write “dod” as well since that’s the sound he’s making. 

To help address his speech difficulties, he has a tablet that acts as an augmentative and alternative communication (AAC) device, helping him talk to others and sound out words. They call it his “helper” and though he’s had it for years, it’s become increasingly important as he works on reading and writing.

“We were told from a young age that it would just be a little bit more difficult for him, but we’re making it work and making the best of it,” Jody said. “The school has been fantastic.”

Because May 14 falls on a Sunday this year, students and teachers at his school will be dressing up in blue the Friday before. Jody will also be attending an assembly to give a full presentation on apraxia, and it’s the first year she’s been able to do so since 2019.

At the beginning of the school year, she went into Nash’s class and read a book to help his classmates understand apraxia, so the assembly will be a chance to spread that message to the rest of the school. Most people know about his disorder since it’s a fairly small school, but the assembly will go more in-depth on the invisible disability and give people insight into how to respond to people with CAS.

“I need to give Nash 10 extra seconds to be able to try and focus and figure out what he wants to say compared to you and I where we don’t need to think about it,” Jody said. “Nash needs to plan everything he needs to talk about, so I think it’s good for young and old [to get educated about apraxia].”

Along with spreading awareness across Muskoka, Jody helps Apraxia Kids Canada by acting as a moderator for their Facebook group. She also regularly coordinates with board members, and she hopes to attend their annual conference this year. In September, the organization hosts a Walk for Apraxia, so Jody also hopes to work with other local families affected by apraxia to bring the walk to Muskoka someday.

Through her years of advocacy, one of the most exciting parts has been watching Nash start to advocate for himself. It’s been fantastic to see his progress, she said, and it makes her emotional to think about the way he’s managed to share his story with others.

“He has that confidence now that he can say, ‘Me need more time, me need more time,’” she said. When other kids ask blunt questions like “Why do you talk funny?”, he responds by trying to educate them. “Nash will just say, ‘No, me have apraxia.’ He’ll literally say, ‘Me brain and me mouth no work properly all the time.’”

It’s been wonderful for her to see how receptive people are to learning about apraxia, but even more impactful than that, her advocacy has connected her to other people in the area who are going through the same thing. When Nash was diagnosed with apraxia, she had never heard of it and didn’t know anyone in the region who was facing the same challenges.

Now, she knows four Muskoka families that have children with apraxia, providing a support system for parents and kids alike. Though CAS remains rare with only about 1 in 1,000 children affected by the disorder, more and more children in Muskoka are being diagnosed as local awareness and education improves. She hopes the increased understanding of apraxia will help people be inclusive and remember to take the time to listen to Nash and other kids like him.

“Just because Nash doesn’t say much sometimes doesn’t mean that he doesn’t want to be heard.”

To learn more about childhood apraxia of speech, visit the Apraxia Kids’ website.

The post Bracebridge Mom Continues To Bring Apraxia Awareness To Muskoka appeared first on Muskoka411.

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with apraxia typically have a good understanding of language and know what they want to say, but they struggle to learn and perform the specific movements required to speak clearly. Brooke Rea is a speech-language pathologist with a concentration in CAS and works with children in communities across Ontario, Muskoka included. She is the owner and director of the Childhood Apraxia & Speech Therapy Centre in Guelph.

“An incredible amount of regular and ongoing speech therapy is required for these children to learn how to verbally communicate,” Rea said. “Generally kids with apraxia are cognitively intact and understand and have good social skills, it’s just that they can’t communicate outwards.”

Rea sits on the professional advisory council for Apraxia Kids, a nonprofit created to support children with apraxia and their families. Apraxia Kids first launched in the United States, but with the help of professionals like Rea, the organization is working to create a Canadian branch. Apraxia Kids Canada is now a registered nonprofit and they’re working toward full charitable status. 

As the Canadian branch continues to grow, Apraxia Kids will continue to offer support and resources to families in Canada through annual walks, conferences and their iPad program, which provides tablets for use as a communication tool. The support is crucial because apraxia is lifelong, Rea said, along with being largely unknown.

“It’s definitely still a disorder that, unless you know someone with it, or have experienced it in your immediate family, you don’t know about it,” she said. “Most families hear it for the first time when their child is diagnosed.”

Speech language pathologists (SLPs) that want to work in apraxia have to seek out postgraduate training on the topic, but it’s becoming increasingly accessible. Throughout the pandemic, more online training has become available, so SLPs can take coursework to improve their training at any time.

Last summer, Apraxia Kids hosted an intensive five-day training boot camp for Canadian and American SLPs. Because it was virtual, it allowed the organization to train a large number of professionals across Canada for the first time, Rea said, so they plan to hold a similar event in 2023. Though COVID has improved access to apraxia education, it’s made it even harder for families to access treatment.

The lack of overall awareness for apraxia often translates to difficulty for families trying to access funding and treatment, and with recent cuts in the public sector, it’s only gotten worse. There are fewer treatment sessions available, Rea said, and families are having to spend more and more money on private therapy. The shift to virtual appointments during the pandemic also presented issues, with many children not responding to the online format.

“Having to make that shift as professionals, especially for the first part of the pandemic, really limited us in making gains with our small younger children,” Rea said. “Doing that virtual therapy has just been a real challenge and so the children have certainly lost precious therapy time.”

Early intervention is an important part of apraxia treatment, so losing that therapy time can be a major setback. For people who want to help improve the situation, there are many ways to get involved, including volunteer opportunities with annual awareness walks as well as chances to fundraise in support of Apraxia Kids’ programming. People can also raise awareness by encouraging schools and municipalities to recognize apraxia on May 14 by wearing blue shirts and lighting up landmarks.

Bracebridge resident Jody Hamilton has been a staunch advocate for apraxia ever since her son Nash was diagnosed three and half years ago. On top of promoting awareness in Muskoka and advocating for her son, she acts as a moderator for the Apraxia Kids Canada Facebook group and works to raise awareness across social media.

“I just keep finding more ways to make awareness for it because the more people that are aware, the more people include him and understand him and understand that his voice is a little different than most children,” Jody said.

Local awareness for CAS grows each year that the Bracebridge falls are lit up blue, she said. Some families have discovered that their children could have apraxia while others have discovered a network of like minded people to connect with. 

Jody has made many friends through awareness events and media coverage, giving her other parents that understand her struggles and giving Nash friends who also have apraxia. He has a special connection with other children with apraxia where they seem to understand each other even without words, Jody said.

Nash is now six years old and has made major progress in treatment, especially in the last year. Now that he’s old enough to attend school, Nash lost some of his funding since it’s no longer considered early intervention, but he’s continued to improve regardless. He has speech therapy three times a week and has an educational assistant that works with him on his speech for about 20 minutes each day at school. 

“I wouldn’t change it for the world, but his life, it’s going to be very different than a child that doesn’t have it,” Jody said. “He’s just going to have to work that much harder, which is fine, and Nash is amazing like that, so it’s great that he’s already starting to advocate for himself.”

Jody was nervous about Nash starting senior kindergarten, but his school has been great and Nash has made major strides. He had between 100 and 200 words he could say clearly at this time last year, but now, he has over 1,000 words, Jody said. There was a time where she didn’t know if he’d speak in more than three-word sentences, but he currently averages about six to eight words. 

Not everything he says can be fully understood by everyone, so he uses an augmentative and alternative communication (AAC) device as well as sign language to help clarify. Jody continually teaches him that it’s okay to be different and that there’s many ways to be different, whether it’s based on ability, culture or a variety of other factors. The first week of class, his teacher was talking about what makes a person special and Nash raised his hand to say that for him, it’s apraxia.

Jody ordered a resource package from Apraxia Kids with bookmarks, stickers and colouring pages that explain apraxia and how to talk with people who have it, aiming to help Nash’s classmates understand his experience. She won’t always be there to advocate for him, so she wants people to know that the most important thing when interacting with someone who has apraxia is to simply give them time to communicate.

“They’re little shining stars,” Jody said. “They’re just trying to get their voice.”

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Childhood apraxia of speech (CAS) is a rare neurological disorder that impacts a person’s ability to speak. Children with CAS often have a good cognition and understanding of language, but they have difficulty learning and performing the complex movements that make up speech. Bracebridge resident Jody Hamilton had never heard of CAS until her son Nash was diagnosed. When he was an infant, he rarely made noise, only crying when he needed to be fed or changed.

“I just thought he was a really well behaved baby,” Jody said. “Then, as he started to get older in between one, one and a half, I started realizing that other kids that I knew his age were starting to talk and babble a lot. And so when we went for our 18-month shots, the doctor asked if he had 20 words and I said, ‘Not even close.’”

They were referred to One Kids Place, a children’s treatment centre that offers a variety of services for children and families with physical, developmental and communication delays and disabilities. Jody got Nash started with speech therapy and other treatment, and at two years and eight months, he was diagnosed with apraxia.

“He was trying to communicate, but he couldn’t communicate with his voice,” Jody said. “He could communicate other ways, so he was very clever. He could point, and if he wanted something, he would come and take you and he’d bring you to it. He was very, very resourceful when it comes to stuff like that compared to [another] kid his age just because he had to be.”

Following his diagnosis, Nash received an augmentative and alternative communication (AAC) device, which allows him to speak through a program on an iPad. He has also learned some sign language to help him communicate as he continues to work on his speech.

Between speech therapy and his other treatment, Nash has made leaps and bounds since he was diagnosed with apraxia, Jody said, but he does have a severe form of the disorder. Now at age five, he has somewhere between 100 and 200 words that he can say clearly. He will likely never speak the way most people do, but that doesn’t stop him from being a thoughtful, active kid with lots of love for the people around him.

“The biggest part is the awareness and the education,” Jody said. “Just letting people know that it’s okay to be different because he’s definitely different, but he is definitely an amazing little guy.”

Brooke Rea, a speech-language pathologist with a concentration in CAS, can attest to that as well. She has devoted much of her career to CAS, acting as a Canadian Ambassador for Apraxia Kids as well as the owner and director of the Childhood Apraxia & Speech Therapy Centre in Guelph. All her patients with apraxia are such hard workers, she said, and having assessed Nash in the past, she knows that’s the case with him as well.

“They are born without the ability to use their own voices to communicate, which is something that you and I and the rest of the world take for granted every single day,” Rea said. “Despite that challenge that they’ve been dealt, they are such happy individuals. They are hard working, they undergo hours and hours and hours of intensive therapy in order to learn to communicate with their own voice, and they’re just so delightful to work with.”

Rea had to forge her own path to become an expert in CAS. Even now, speech pathologists that want to work in apraxia have to do additional professional development when they’re done with school because grad programs often cover very little on CAS, she said. After she finished grad school, Rea started to work with Apraxia Kids, a nonprofit that works to spread apraxia awareness and education.

Working with Apraxia Kids lit a fire in Rea to improve the help provided to children and families affected by CAS. She and her fellow Canadian Ambassadors hope to create a full Canadian branch of the nonprofit, but until then, it’s important to raise awareness so that treatment and funding options can improve.

“One of the things I say to most of my families is that their MPP should know what they’re living with, and most MPPs have never heard of apraxia,” she said. “We need to increase our awareness before we can advocate more successfully, especially in terms of funding.”

Most people have never heard of CAS unless they personally know someone who has it, Rea said, so one of the primary things she wants people to understand about apraxia is that it’s lifelong and often requires extensive treatment.

“Our kids will need intensive therapy as early as possible in their lives, and access to the right therapy is still something that many families struggle with,” she said. “Publicly funded speech therapy doesn’t usually meet the needs of our kids, and many of our families are left to seek services either privately or to go without service if that’s not something they can afford to do, which is still something that’s a major problem for our children with apraxia.”

To learn more about CAS, visit the websites for Apraxia Kids and Child Apraxia Treatment.

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