A Mother’s Strength: Roxanne and Alice’s Journey of Love, Advocacy, and Hope

Today, we want to excitedly share Alice's journey.  A child whose rare genetic disorder has shaped not only her own life but also the life of her devoted mother, Roxanne Borisov. Their journey is one of resilience, love, and an unbreakable bond that defies the limitations of a medical diagnosis.

Alice, an eight-year-old girl with an extremely rare condition known as CASK gene disorder, is one of 300 children in the world diagnosed with this condition. Alice has the most severe type of the disorder called MICPCH. The disorder, caused by the mutation in the CASK gene, has profound effects on brain development, leading to structural and functional brain abnormalities and a multitude of symptoms including developmental delays, severe drug-resistant epilepsy, feeding issues, sleep disturbance and extreme difficulty with gross and fine motor skills. Most children with this disorder do not speak and have difficulty using alternative methods of communication, do not walk, struggle to use their hands, and require wheelchairs for mobility. Yet, despite these challenges, Alice is a beacon of joy—her spirit radiating beyond her physical limitations.

A Life of Advocacy

Roxanne never expected to become an advocate, but life had other plans. From the moment she realized Alice’s needs extended far beyond typical medical care, she knew she had to fight—not just for her daughter, but for other children like Alice who deserve the same opportunities as any other child.

“Advocacy was never a role I wanted,” Roxanne admits. “I thought I would just provide a nurturing environment and she would grow up like any other child. But I quickly realized that if I didn’t fight for her, no one else would.”

The challenges of raising a child with a rare disorder extend far beyond medical issues. The struggle to access proper equipment, therapy, and support is a constant battle. In Canada, where Roxanne and Alice live, there are public funding programs to assist families with specialized equipment, but they rarely cover the full cost. Roxanne has spent years navigating the complicated system, seeking alternative funding from charities, and working tirelessly to ensure Alice has what she needs.

One of the most difficult moments came when Alice outgrew her stroller. Public funding would not cover a new wheelchair until the mandatory five-year period had passed. However the stroller was no longer suitable, and Alice needed proper support for mobility. “I was desperate,” Roxanne recalls. “I had no idea how we would manage. But then, an amazing opportunity came our way.”

A new wheelchair company, Participant Assistive Products co-founded by individuals with disabilities, heard about Alice’s situation. They offered her a state-of-the-art wheelchair, Cub,  in exchange for her being a model to help launch the product in North America. “It was a gift,” Roxanne says, her voice filled with gratitude. “Without it, I don’t know how we would have managed. It was the perfect fit for Alice’s needs. Plus it was an honour to represent such a worthy cause as the company brings the wheelchair to people in need around the world!” Roxanne is particularly grateful for assistance provided by Dave Calver, co-founder and Chief Clinical Officer, who is an occupational therapist and a wheelchair user himself. “It was an incredible experience to get wheelchair adjustments and tips from a professional who had first hand experience using the wheelchair. And his energy and positive attitude are contagious,” Roxanne says.

A Mother’s Daily Struggles and Triumphs

Roxanne’s life is filled with an exhausting combination of caregiving, advocacy, and managing Alice’s medical and educational needs. Because Alice cannot attend a traditional school, her learning happens at home, requiring extensive reports, therapies, and constant adjustments.

“By the time Alice goes to bed, I’m often too exhausted to do anything else. I fall asleep in my chair while working on my computer,” Roxanne shares. But no matter how tired she gets, she refuses to stop fighting for Alice’s future.

One of her biggest dreams is to send Alice to an intensive therapy program at Virginia Tech, a university that has developed specialized therapy for children with cerebral palsy and similar conditions. The program is expensive, and despite past fundraising efforts, Roxanne has not yet been able to secure enough funding. But she remains hopeful. “It’s my dream to get her there,” she says. “I know it would change her life.”

Despite all the medical complexities, Alice’s condition does not define her. “She is the light of our lives,” Roxanne says with a smile. “She teaches us how to persevere, how to appreciate life beyond achievements. She doesn’t speak, but she communicates in ways that touch people deeply. She can connect with others without saying a word.”

Finding Strength in Community

Roxanne has learned the power of connection. She is part of multiple online communities for parents of children with disabilities, exchanging advice, support, and knowledge. She also runs an instagram page for Alice, which has grown to over 449 followers and a Facebook page with over 113,000 followers.. “So many parents ask me for advice,” she says. “I dream of creating a YouTube channel where I can share practical tips for parents who may not have access to the same resources.”

Through these connections, Roxanne has also learned invaluable lessons from other parents, including alternative therapies and new medical approaches. One mother, whom she met through a rare disease support group, introduced her to a therapy that has helped Alice make significant progress in her motor skills. “Without these communities, I would never have known about half the things that have helped Alice,” Roxanne acknowledges.

Lessons in Love and Resilience

One of the hardest aspects of parenting a child with a rare disease is the uncertainty. Roxanne is painfully aware that some children with Alice’s condition do not live to adulthood. “We don’t know what the future holds,” she admits. “We’ve lost several children in our support group. It’s a constant fear, but I refuse to let that fear consume me.”

Instead, she chooses to focus on the present. “We celebrate every little moment. Alice’s birthday isn’t just one day—we celebrate for a month. We make every day count.”

This mindset shift came after Roxanne’s life-altering accident. A year and a half  ago, she was hit by a car while riding her bike. The accident left her with severe injuries, and for a time, she struggled to care for Alice. “That experience changed me,” she says. “It taught me to live each day as if it were my last, to focus on what truly matters.”

Advice to Other Parents

For parents who are just beginning the journey of raising a child with a disability, Roxanne offers simple but powerful advice: “Never stop trying. Never stop believing. Even if it seems impossible, keep pushing. If you don’t advocate, your child may never get what they need.”

She emphasizes the importance of connecting with other parents, seeking out support groups, and being open to learning. “I’ve made mistakes along the way,” she admits. “Not every advocacy effort has been successful. But I’ve learned that failure is better than never trying at all.”

Perhaps most importantly, she urges parents not to let grief consume them. “It’s easy to get lost in the sadness of what your child may never do. But that sadness can steal the joy of what they can do. Alice has taught me that milestones aren’t everything. What matters is that she is happy, loved, and experiencing life.”

A Future of Hope

As Roxanne looks ahead, she remains hopeful. She continues to fight for Alice’s needs, to push for inclusion, and to share her knowledge with others. She dreams of a world where children like Alice have the same opportunities as any other child, where access to essential equipment and therapies is not an uphill battle.

Through her advocacy, love, and relentless determination, Roxanne is proving that disability does not define a person. Alice may face immense challenges, but she is also filled with joy, curiosity, and the ability to touch the hearts of those around her.

“Alice is extraordinary,” Roxanne says. “She may not walk or talk like other children, but she has changed our lives in ways we never imagined. And I wouldn’t trade that for anything.”

To find out more about the Cub wheelchair, click here.