Interviews

This week marks Neurodiversity Celebration Week. To celebrate, we share an interview between Katy and Samantha. Katy is a parent of and a big advocate for Grandview kid Jake. Samantha is an Occupational Therapist at Grandview Kids. The three have spent the past year learning together with Jake in the Entry to School program.

Their conversation focuses on Jake’s sensory needs and preferences. These factors play a big role in Jake’s everyday life. Katy shares what helps Jake feel calm, regulated and ready to engage with the world. Samantha offers a clinical perspective on why these sensory supports matter. This conversation is a reminder that neurodivergent brains aren’t something to “fix.” In fact, they are something to understand, celebrate and support on a deeper level.

An interview between Samantha and Katy

Sam: Katy and I wanted to discuss something that plays a huge role in a neurodivergent person’s wellbeing: sensory needs and preferences. Understanding sensory needs isn’t about “fixing” a child. Rather, it’s about supporting how their brain works so they can engage, play, learn and connect comfortably. Every person’s brain processes the world through the senses: touch, sound, movement, taste, sight, smell, and even internal senses like body awareness, feelings and balance.

Neurodivergent people often process these sensations differently, which can lead to strong likes, dislikes and unique ways of interacting with their environment. This past year, I worked with Katy and her son Jake in the Entry to School program. Through the program, Katy and I worked with his childcare and school educators to support his sensory and regulatory needs.  Katy, can you please describe some of Jake’s sensory interests and what these mean to him?

Katy: One of the biggest things that helps Jake regulate his body and feel calm is water.

Water has always been something Jake is drawn to. The movement, the sound and the feeling of it seem to help his nervous system settle. When he’s feeling overwhelmed or dysregulated, water activities can help him refocus and feel more comfortable in his body.

At school, his team has been wonderful in supporting his sensory needs. They provide him with water-based fidget toys and often allow him time to play in the sink. Recently, they introduced something new that Jake absolutely loves—a continuous water tornado. Watching the water spin in a constant swirling motion is incredibly calming for him. It gives him something predictable and soothing to focus on. It helps regulate his body when he needs a moment to reset.

Jake also benefits from movement throughout his day. In the classroom, he has a rocking chair at his desk, which lets him gently rock while he works. This kind of movement helps him stay regulated and focused. He is also given opportunities to take breaks from the classroom for movement activities when his body needs it. These breaks help him release energy and return to learning feeling calmer and more ready.

“Supports like these might seem small, but for Jake, they make a big difference. They help him regulate his body, feel safe in his environment and participate more fully in his school day.” – Katy, Grandview Kids mom

Sam: Having many sensory interests and stimming (the repetition of a wide range of actions, often done rhythmically) are important regulation tools for neurodivergent people. They give us clues about what their body may need to help them grow and learn. I’ve noticed that when Jake’s interests and sensory needs are supported at school, he is better able to participate and looks more comfortable. What does this look like at home for your family?

Katy: At home, we try to create an environment that supports Jake’s sensory needs in ways that feel natural and accessible to him. Movement is a big part of how Jake regulates his body, so we make sure there are lots of opportunities for physical activity throughout the day.

Jake loves to move. He enjoys biking and rollerblading. We even have a swing inside the house that he can use whenever his body needs that calming, rhythmic motion. Outdoor play is also very important to him, so we make sure he has access to the outdoors whenever possible. Fresh air and space to move help him reset and feel his best.

We also keep a variety of sensory toys available for Jake. Some of his favourites include water fidget toys, kinetic sand, marble runs and fine motor toys he can manipulate with his hands. These activities give him opportunities to explore different textures and movements that help regulate his sensory system.

Jake also loves music and movement. Our home often has music playing, and it’s something he naturally responds to. Music gives him another way to move his body, express himself and regulate his energy.

Transitions can sometimes be challenging for Jake, so we’ve learned that preparation makes a big difference. When we’re getting ready for school or heading somewhere, I try to give him as much information as possible about what to expect. At school, he uses visuals to help with transitions, but at home, I usually support him by talking things through and explaining plans in detail.

I’ll often give him countdowns when it’s time to finish a preferred activity, so he knows a transition is coming. I also use simple language like “first this, then this” to help him understand what will happen next. Giving Jake time and information to process changes helps make transitions smoother and helps him feel more comfortable.

“Every small support helps Jake navigate his day with more confidence and ease. By creating a home environment that meets his sensory needs, we’re helping him feel safe, regulated and ready to take on the world in his own way.” – Katy, Grandview Kids mom

Sam: What else have you learned from Jake about sensory interests and needs that you think is important for others to know?

Katy: One of the biggest things we’ve learned on this journey is that sensory needs aren’t “extra” or something to fix. Jake’s sensory needs are simply part of who he is and how he experiences the world. When we support those needs instead of trying to stop them, we see Jake thrive. The movement, the water play, the music, the breaks — these are all tools that help him regulate his body and feel comfortable in his environment. To other parents walking a similar path, trust your child to share what helps them feel calm and safe. What may look small or unusual to others can make a huge difference for our kids. When we listen, adapt and meet them where they are, we give them the space to be their best selves.

Every year, Giving Tuesday reminds us of the power of community when individuals rally together to change lives through compassion and generosity. For families like Amber’s, whose journey with her son Kaysan began with uncertainty and evolved into one of hope and empowerment, Giving Tuesday is more than a date on the calendar. It is a celebration of the life-changing work done by organizations like Grandview Kids and a reminder of why giving truly makes an impact.

Amber and her husband, Zain, are parents to three teenage boys, two of whom have autism spectrum disorder (ASD) and one with attention deficit hyperactivity disorder (ADHD). Their home is filled with boisterous laughter, high energy and a shared love for Toronto sports teams. Every day is a new comedic adventure, making the little moments memorable and enjoyable. Their eldest son, Kaysan, especially loves food adventures, trampoline parks and family pancake mornings. When Kaysan was diagnosed with ASD shortly after his second birthday, life took a turn that Amber describes as both challenging and transformative.

Kaysan’s early signs and symptoms included speech delay, limited eye contact, not playing or interacting with other kids, toe walking and not always responding to his name. What were the classic early signs of autism were the first signs that made Amber and Zain realize something may be different and that he would need extra support. 

“In the early years, instead of experiencing the joy and ease of parenthood, it often felt like we were living under a cloud of constant anxiety and pressure,” Amber recalls. “We were always searching for the right supports, planning everything far in advance, and preparing an exit. Strategies for even the simplest outings in case a meltdown happened. Going to birthday parties or family gatherings wasn’t carefree, I often had to take the kids on my own when my husband was working, I couldn’t even enjoy being there. My attention was always split between managing their needs and trying to hold myself together.”

For a time, their family’s world felt isolating. Friends and extended family did not always understand what daily life with an ASD diagnosis was like. While others seemed to move through parenthood with ease, they were just trying to make it through the day without falling apart.

The turning point came when their paediatrician connected them with Grandview Kids, a place that would become a cornerstone in their family’s journey. Through Grandview Kids, Kaysan began receiving speech therapy, occupational therapy and Applied Behaviour Analysis (ABA) services. Amber and Zain were able to attend a past program called “More Than Words,” which taught them how to build stronger, more meaningful communication with Kaysan. “That course was an incredible experience,” Amber shares. “It truly helped us understand how to better connect and communicate with Kaysan.”

At Grandview Kids, Kaysan found a safe space where he could be himself, free from judgment, surrounded by therapists and staff who saw his potential. His speech improved, his confidence grew and his family began to feel that elusive sense of belonging they had been missing. Amber shares how they also attended every community event for families with children with ASD and other diagnoses they could, finding comfort and belonging among families who understood their journey.

Since first connecting with Grandview Kids in 2012, Amber’s family has become a powerful force for advocacy and support. Amber joined the Family Advisory Council (FAC) in 2017, helping ensure that the voices of families were heard in every decision made at Grandview Kids. She spearheaded multiple Run Ajax teams that raised thousands of dollars for Grandview Kids. Within the community, she also helped organize toy drives through the Muslim Moms of Durham.

One of Amber’s proudest achievements was serving alongside the Family Engagement Committee in 2014 as a founding member of the Parent Task Force, contributing to the successful advocacy for funding Grandview Kids’ new Ajax-based headquarters, The Jerry Coughlan Building. This 10-year-long project came to completion in November 2024 when the doors at Grandview Kids – The Jerry Coughlan Building opened, offering opportunities for service expansion to thousands of children and youth in Durham Region.

“This experience highlighted the power of community-driven efforts, reinforced the importance of amplifying the voices of families navigating similar challenges and strengthened my belief in what families can achieve when we come together,” Amber optimistically shares.

Giving Tuesday is more than a fundraising event; it is an opportunity to invest in the potential of children and youth like Kaysan. Every donation to Grandview Kids supports critical therapies, accessible programs and family resources that make a real difference in the lives of children and youth with physical, communication and developmental needs.

“Grandview has been our village,” Amber reflects. “And there are so many families still waiting for that same support. Giving to Grandview means giving hope—to kids who deserve the chance to reach their full potential, and to parents who need to know they’re not alone.”

Krystle and Chris want their daughter, Scarlett, to have the chance to enjoy a happy, fulfilling childhood filled with laughter, play and a chance to explore the world around her, just like any other child. In many ways, three-year-old Scarlett does exactly that. She has humour, sass and curiosity. She loves books and dinosaurs in equal measure, rotates her favourite stuffed animals weekly (there are three bins full!) and lives for the thrill found in local fair rides and water slides. Halloween is her absolute favourite time of year, lighting up at the chance to dress up and join in the fun.

Behind Scarlett’s bright smile is a rare and complex medical journey. This unexpected path they were placed on has challenged her family in ways they never imagined, while also revealing a depth of resilience, love and hope they never thought possible.

Scarlett was born full-term but glaringly small at just 5 pounds, 4 ounces. In the early days, she was born with one clubfoot, but there were no immediate red flags. She passed all her newborn tests and came home after just two days. Shortly after, concerns began to surface. She had difficulty feeding and was not gaining weight as expected. At just three months old, she stopped eating entirely and was admitted to hospital, where she received a nasogastric (NG) feeding tube. After a series of tests, her family received a life-changing news at a regular doctor’s visit. Through micro array genetic testing, they discovered that Scarlett had an ultra-rare genetic deletion of the third chromosome (deletion of region 3p13p12.3). She is the 14th documented case in the world with that specific deletion.

There was no roadmap, no named syndrome and very few answers.

“It was a Friday the 13th – a day we’ll never forget,” says her mom, Krystle. “We were scared, overwhelmed and heartbroken. But at the same time, we were relieved to have an explanation and now a way to start putting the pieces together.”

Scarlett’s diagnosis has been associated with developmental delays, failure-to-thrive, slow growth and dysmorphic facial features. For Scarlett, this affects her mobility, communication and development. She is not yet able to walk on her own and communicates using gestures, expressions and her own version of sign language. She relies on a gastrostomy tube (G-Tube) for nutrition and assistance with her daily routine, one that is carefully planned around feedings and medical appointments.

Scarlett’s paediatrician referred her to Grandview Kids after receiving her diagnosis at six months old. They were bracing for a long wait, but instead, they were welcomed quickly into a circle of care. “From the moment we started at Grandview, we felt supported,” says Krystle. “We met with a multifaceted team for physiotherapy, occupational therapy and speech therapy. They saw Scarlett not for what she couldn’t do, but for everything she could become.” That mindset changed everything.

Over the years, Grandview Kids has helped Scarlett and her family navigate everything from mobility and communication to feeding strategies and equipment needs.

She receives regular hearing checks and sees specialists to monitor her growth and development. She also has custom orthotics, trialled different walkers and is working toward greater independence every day. Scarlett has progressed more quickly than anyone expected, moving from knee-foot orthoses (KFOs) to ankle-foot orthoses (AFOs) to supramalleolar orthoses (SMOs) in record time. “Her physiotherapist, Jessica T., hadn’t seen anyone make that kind of progress in such a short period,” says Chris. “It gave us real hope.”

From left to right: Scarlett with her Grandview Kids therapists Melissa M., speech-language pathologist, Natasha S., occupational therapist and Jessica T., physiotherapist.

Each of Scarlett’s therapists have made lasting impressions, but Jessica, has become a trusted champion for Scarlett. “She goes above and beyond,” says Krystle. “She never gives up on Scarlett, always thinking of what’s next, how to push her further. She helped get equipment for Scarlett to use at daycare, so she can eat and move around like the other kids. That made such a difference for our whole family.” This encouragement compelled Krystle and Chris to nominate Jessica for Grandview Kids’ 2025 Power of One award, which she did in fact win. This award demonstrates the incredible impact she has made on the families she works with, families like Scarlett’s.

Grandview Kids physiotherapist Jessica T. receiving the 2025 Power of One award at the Grandview Kids 2025 Annual General Meeting.

“Without Grandview’s support, we don’t know where we’d be,” says Chris. “They’ve given us the tools, therapies and, most importantly, the belief that Scarlett can continue to grow and thrive.” While the road has not been easy, Krystle and Chris are incredibly proud of how far Scarlett has come and are also filled with cautious optimism about what is to come. “She’s our first child, and like any parent, we had expectations. First steps, first words, the typical milestones,” Krystle shares. “But our path has looked different and that’s okay. She’s happy. She’s smart. She loves daycare and being around other kids. There’s excitement when thinking of the future now. She’s accomplished so much in 3 years. What will she do in the next 3 years? 10 years?”

As this year’s Holiday Campaign Ambassador Family, Krystle and Chris want their story to inspire not just hope, but action.

“Every donation to Grandview makes a difference,” says Krystle. “It helps families like ours access therapies that open doors for kids with disabilities. It gives them a chance to feel included, to be part of something, to just be kids.” The Family Engagement Team’s events like Accessible Trick-or-Treating and Pumpkin Palooza mean the world to families who are often left out. “When you’re surrounded by other families who understand, who are living a similar reality, you feel seen,” Krystle adds. The overwhelm becomes joy. The unknown and isolation turn into connection and community. With your help, this is the gift Grandview Kids can give to families like Scarlett’s.

Two years ago, the launch of the Extensive Needs Service (ENS) marked the beginning of something transformative for families of children and youth with complex needs in Ontario. For Grandview Kids families like Kerry’s, the ENS not only offered therapy, but also provided hope, direction and the kind of support that fundamentally changes lives.

The ENS is a specialized program that provides timely, vital wrap-around support to over 1,100 children and youth with urgent and complex needs and their families in Ontario each year – close to home. It is jointly funded by the Ministry of Health and the Ministry of Children, Community and Social Services, and implemented jointly by Holland Bloorview Kids Rehabilitation Hospital, Children’s Hospital of Eastern Ontario (CHEO), and McMaster Children’s Hospital, along with nearly 20 community and regional partners across Ontario, including Grandview Kids.

Before ENS, children and youth under 18 years with extensive needs had to rely on repeated visits to emergency departments, avoidable acute care admissions or repeat referrals to urgent/crisis services. While these options may address immediate, emergency or temporary needs, they have not provided the full spectrum of individualized care required.

*Kerry, posing with her triplet sons, Christopher, Daniel and Armand, warmly embracing her.*

Kerry is the mother of triplet boys, 11-year-old Christopher, Daniel and Armand, each uniquely brilliant, diagnosed with autism spectrum disorder (ASD) and presenting a different mix of challenges and strengths. Alongside her husband, Jamie, and her mother, Memere Anne, Kerry has spent years navigating developmental therapy, school supports and the emotional rollercoaster that comes with raising neurodiverse children.

All three boys were referred early to Grandview Kids for occupational therapy, but over time, further diagnoses revealed a more complex picture involving a range of ASD, attention deficit hyperactivity disorder (ADHD), Pathological Demand Avoidance (PDA), sensory processing disorder and, in Daniel’s case, Tourette syndrome. Despite these challenges, the family finds joy in camping together, gaming and playing sports like soccer and baseball. Still, their day-to-day lives can be overwhelming. “When you have three children on the spectrum and they all react to the world in different ways, sometimes one child’s dysregulation sets off a chain reaction. Triggers and meltdowns become a family in crisis.” The ENS stepped in right when the flood of high emotions and dysregulation felt unbearable.

Since its inception, the ENS has undergone a remarkable transformation, as it was initially envisioned as a trial. The program, known for its flexibility and responsiveness, is now serving thousands of families and counting. Its evolution is marked by continuous learning and transformation. For Kerry’s family, the first therapy appointments involved all three boys in the same room with multiple therapists. It quickly became clear that a one-size-fits-all model would not work, especially with the boys’ different profiles demanding the service’s ability to evolve.

“They listened to us. We gave feedback, and Grandview changed the plan. They adapted to our kids, not the other way around.”

Therapists adjusted their approaches, shifting language and rephrasing demands in a way that reduced anxiety and increased engagement after further understanding Christopher and Armand’s PDA diagnoses. The program also introduced individual sessions alongside group work, allowing each child’s voice and specific needs to emerge more clearly, while still supporting sibling dynamics.

One important aspect of the program is its focus on “co-design,” characterized by its emphasis on the family’s voice, which leads the way in shaping how care is delivered. Through the ENS’s co-design function, Kerry not only feels heard but also feels included, as Grandview Kids ensures that listening to her voice and acting on her feedback is a priority. ENS clinicians and program leads regularly invite families like Kerry’s to give feedback, participate in planning discussions and even suggest interventions. For Kerry, who lives with Irlen syndrome, ADHD, and possibly ASD herself, being treated as a valued member of the team was empowering.

“I feel like one of the specialists in the room. They ask, ‘What do you think? Does this work?’ and then they actually listen.” – Kerry, parent of ENS clients at Grandview Kids

This collaborative spirit has led to meaningful shifts in programming, from changing session structures to developing better emotional identification tools for the boys. These seemingly “small” changes have had huge ripple effects, even into the home and classroom. “Teachers at school have noticed a difference, and I attribute that to what they’re learning at Grandview.”

The ENS team comprises many highly skilled clinicians, as well as a dedicated ENS Peer Navigator, Lisa D., who is deeply integrated into the program’s delivery model at Grandview Kids. Lisa is a parent of children with extensive needs herself. She is often the first point of contact for ENS families, including those waiting for services, offering support based on her lived experience combined with practical guidance. She reaches out, checks in and offers guidance so parents know they’re not alone. “Lisa has been there. She knows what it’s like to be in crisis, to be overwhelmed… [and now] offers direction, passes on knowledge and helps you navigate from a different perspective,” Kerry says.

For Kerry, Lisa’s support was game-changing. From helping complete intake forms for all three boys (a massive task, especially given Kerry’s own reading challenges) to talking through emotional struggles and care planning, Lisa brought calm to chaos. “She took the paperwork, read the questions aloud and helped me answer one for each child. When you’re tired, burnt out and unsure which kid you’re even answering about, that kind of help is massive.”

For Kerry, the greatest gift has been the reassurance that she is not alone and that she is doing a good job, even on the hard days. “There are times when I feel like I’m failing, like I’m not doing enough. But Grandview is my place to say, ‘Hi, I need help.’ And they’re there.” The ENS began as a pilot project but has evolved into a blueprint for how care can be delivered: personalized, flexible, co-designed and rooted in empathy and real-life experience.

About the ENS

The Extensive Needs Service provides wrap-around supports to children with urgent and complex needs and their families in Ontario – close to home.

Jointly funded by the Ministry of Health and the Ministry of Children, Community and Social Services, the program is led by CHEO, Holland Bloorview Kids Rehabilitation Hospital and McMaster Children’s Hospital in close partnership with their community partners.

Launched in 2023, the program provides access to evidence-based and trauma-informed care to meet the unique needs of some of the most vulnerable children in the province. The aim is to reduce barriers families may face navigating a complex health care system and accessing the right care their children need when they need it. To date, over 2,000 families have received support through the program.

Learn more: grandviewkids.ca/extensive-needs-service

Beth and Andrew’s parenting journey is marked by love, learning and advocacy. Married for 26 years, they are the proud parents of three children, Aaron (12), Arielle (9) and Alayna (4). Each of their children has brought something beautifully unique to their lives, and each, in their own way, has taught them the importance of celebrating every stage of childhood.

Aaron was born premature at just 26 weeks of gestation. His arrival was the beginning of a long and complex medical journey. His first few months of life were spent in the Neonatal Intensive Care Unit (NICU), followed by years of in-home nursing and diagnoses that would shape the trajectory of his and his family’s lives. Beth recalls, “The first three years were the hardest. We were dealing with heart, kidney, lung and gut issues. He was on Total Parental Nutrition (TPN) at home, receiving his nutrition through a G-tube. He also had a colostomy bag… so many things all at once.”

At two years old, Aaron was diagnosed with autism spectrum disorder (ASD). While ASD runs in the family, Beth describes being somewhat “numb” to the diagnosis at the time. “There was already so much going on. I just thought, okay, this is something else we’ll overcome.” As Aaron entered nursery school, the signs became clearer. “I started noticing how different he was from his peers – how he wouldn’t hold my hand like the other kids did with their parents, and how unpredictable he was. That’s when it really hit me: This is the ASD now.”

Beth is quick to acknowledge that Aaron’s progress has only been possible because of the incredible supports they received over the years. From early intervention programs to specialists at SickKids and Grandview Kids, Aaron was wrapped in a community of care. “Intensive Behavioural Intervention (IBI) therapy at home for 8 hours a day and occupational and physiotherapy, Applied Behaviour Analysis (ABA) therapy with Grandview Kids changed everything,” she says. “He started responding to his name, didn’t need a stroller anymore. Things that once seemed so far away started to happen.”

Beth remembers a therapist once telling her, “Thirty or forty years ago, Aaron would have been in an institution.” That thought stuck with her. “It made me realize how grateful I am for the system we have today. It’s not perfect, but it’s getting better.” Thanks to inclusive education, Aaron is now in a regular classroom with integrated supports. His classmates know, understand and include him. He has also been able to attend summer camps and sports programs that allow him to just be a kid.

Despite their challenges, Beth emphasizes how joyful family life can be. The kids love indoor playgrounds, and pizza nights are a family favourite. “If everyone’s happy, Mom’s happy,” Beth laughs. “And if we can get Aaron away [from] typical preteen activities like YouTube and gaming for a while, it’s a win.” Long road trips to visit family in the U.S. are treasured memories, and simple moments like everyone laughing in the car or playing together are what Beth holds dearest.

On top of being mom, Beth is a fierce advocate. She served on Grandview Kids’ Family Advisory Committee (FAC) for nine years, where she helped shape services based on real caregiver experiences. “When Dr. Hunt approached me to join, I felt empowered. They wanted to hear from us. What was it like waiting in the lobby? What would make it better? They listened, and it meant so much.” Even though she’s stepped away due to a two-year rotation break, she plans to return. “Advocacy gives me pride. You go through something hard, and you want it to be easier for the next family. That’s why I do it.”

Beth also champions greater awareness about autism. She highlights books, shares her story widely and even participated in a podcast episode on “Beyond Autism, Beyond the Label,” offering insight into Aaron’s journey. “The more people hear our stories, the more they can understand and make better decisions – for their kids, patients and communities.”

For Beth, National Child Day is about recognizing every child’s right to a joyful, fulfilling childhood, no matter their diagnosis, background or challenges. She wants to ensure that barriers are broken and opportunities are unlimited. “Growing up, I had a beautiful childhood. I want the same for all my kids and for every other child. Aaron has that right, too. He gets to be in the classroom, play sports, go to camps and choose what he enjoys. That’s what freedom looks like for a child.”

She adds, “When you’ve been through something hard, and you tell your story, maybe someone else doesn’t have to go through the same thing. Maybe they get seen sooner. Maybe they don’t have to wait two hours in an empty waiting room. Sometimes it’s the little things, like toys in the waiting area, that change a family’s experience.” She encourages others to realize that their story and voice matter. Every step forward is worth celebrating.

At just 21 years old, Ella Wiley is already making a profound impact on the world around her. A fourth-year pre-med student at York University, majoring in Health Studies with a minor in Life Sciences in Society, Ella is determined to become a paediatric neurologist. This dream is shaped not only by her academic passions but also by her lived experience with a rare condition called Charcot-Marie-Tooth Disease (CMT).

Ella’s journey began at the age of 3, when a preschool teacher noticed she was struggling with mobility, particularly how she would carefully walk down the stairs with both feet on each step. That observation led to a referral to Grandview Kids, where Ella’s sister, Anna, was already receiving speech and occupational therapies. Though Ella started with physiotherapy and occupational therapy at Grandview Kids, it would be more than a decade before she received a diagnosis.

“I wasn’t officially diagnosed with CMT until I was 17,” Ella explains. “We were at Markham Stouffville Hospital and the paediatric doctor noticed something unusual. She told me she’d only read about CMT during her residency, but she’d never actually seen a case before.”

CMT is a rare neurological disorder that affects the peripheral nerves, which control the muscles. Ella explains that CMT affects the nerves, leading to muscle weakness, balance issues and changes in the feet and hands. It’s not life-threatening, but it influences mobility and physical endurance. For Ella, that meant ongoing mobility challenges and unexplained pain. “Growing up, everyone just thought this was the way I was. Whenever we were on long walks or vacations, my muscles and bones would shift, my feet would swell and I’d be in pain. We just planned around it,” she says.

With no cure for CMT, Ella learned to manage her symptoms. She does daily strengthening exercises using resistance bands, especially for her ankles and finds working out regularly helps maintain muscle tone. Orthotics and ankle-foot orthoses (AFOs) have also made a huge difference. “I can walk longer distances without pain now,” Ella beams. “There are different types of CMT, and I have one of the milder versions. I’ve met people who can’t walk at all and need surgeries to rotate their feet. It really puts things in perspective.”

Ella credits Grandview Kids not just for giving her the physical tools to improve her mobility, but for providing a community that understood her. “It wasn’t just about therapy – it was about feeling supported,” she says. “They taught me how to walk up and down the stairs properly and gave me more control over how I move. But the biggest impact was the environment. Grandview Kids was always welcoming, uplifting and filled with people who just ‘get it.’”

Her experience at Grandview Kids extended beyond accessing services. She returned as a sibling and former client, participating in Family Engagement Team activities and events that helped her learn to advocate for herself and others. “When you’re around people who truly understand what you’re going through, even without saying it, it gives you the strength you didn’t know you needed,” Ella shares.

Over the years, Ella has faced many physical challenges but receiving a diagnosis brought clarity and empowerment. “It gave me an actual reason for the struggles I’d faced,” she says. “Now I’m more motivated to speak up and advocate for what I need.” She also acknowledges her family’s unwavering support, especially her sister Reggie, who instinctively offers her arm when walking downhill so she can steady herself.

Outside her studies, Ella finds joy in reading, singing and playing the piano and harp. She, Reggie and Anna share a love of K-pop and attending concerts. The Wiley sisters support each other through music, laughter and life’s hills, both literal and figurative. Ella allows herself to find beauty and meaning in the things she enjoys. Reading has become an opportunity to not just immerse herself in a good plot but also discover characters that resonate and give her a strong sense of belonging. Ella illustrates that finding these characters “make me feel like I matter, that I’m worthy – and that representation truly matters.”

Now serving as a Grandview Kids Ambassador, Ella wants to be a representative for other children and youth. She offers powerful advice to other young people navigating disability and uncertainty:

“To anyone who’s living with a disability and unsure about what’s ahead: Please know that you are not alone, and your path—while it may look different—is still full of possibilities. You are capable, worthy, and deserving of joy and success.

Start by learning to advocate for yourself—what your needs are, what helps you thrive, and who your support people are. Build a community that uplifts you. Physically, do what you can to care for your body in a way that feels right for you. Mentally and emotionally, give yourself grace. It’s okay to have hard days.”