The Gift of Walking for Charlie

Hi, my name is Emily Ives and I’m a close friend of Kyla and Doug Chisholm. These proud and loving parents reside in Halifax, NS, with their son, Charlie. He is a joyful, determined little boy who lights up every room with his cheeky smile and infectious laughter. Born on March 22, 2021, Charlie entered the world with a fight. He spent the first month of his life in the NICU at the IWK, battling feeding difficulties that at first seemed like minor issues. However, they soon realized that this was the beginning of a much more challenging path.

As the days passed, Kyla and Doug noticed troubling signs; Charlie’s movements seemed atypical. Those movements were later diagnosed as infantile spasms, a type of seizure disorder. Kyla and Doug’s life rapidly changed as they found themselves repeatedly at the IWK searching for answers and trying to piece together an increasingly complex puzzle.

At five months old, Charlie was diagnosed with a rare and complex condition—Congenital Disorder of Glycosylation (CDG) – PIGQ. This specific form of CDG affects the glycosylphosphatidylinositol-anchored protein (GPI-AP), which plays a critical role in the body's ability to function. The damage to this protein disrupts vital systems in Charlie’s body, resulting in daily seizures, muscle weakness, low muscle tone, difficulties with motor coordination, and being dependent on a feeding tube. Due to these difficulties Charlie is unable to walk or sit independently and communicate verbally.

Despite these enormous challenges, Charlie is the light of his family’s life. His personality is as big as his heart—loving, happy, and full of humor. In an effort to build his strength, coordination, and communication skills, Charlie participates in various rehabilitation therapies: physical therapy (PT), occupational therapy (OT), music therapy, and speech therapy. While these therapies are vital, the severity of Charlie’s condition means that regardless of the progress he makes, he will always require support to navigate daily life.

From the very beginning, Kyla and Doug have been fiercely dedicated to Charlie’s care, putting his needs at the forefront of everything they do. They are his biggest advocates and cheerleaders, his devoted caregivers, and his unwavering support system. I’ve witnessed their incredible strength, resilience, and devotion as they navigate Charlie’s complex diagnosis. Unfortunately, the costs associated with treating complex and ongoing medical conditions are substantial and not all expenses are covered by the healthcare system. Kyla and Doug have spared no expense and explored every possible avenue that may aid in Charlie’s quality of life.

The healthcare system, while essential, has significant gaps when it comes to addressing the needs of severely complex children. These gaps place an unjust burden on parents who are already fighting to provide their child with the best possible care. Healthcare should be a right for every child, but sadly, many children, like Charlie, are left to navigate a system that does not fully support their needs.

Charlie’s greatest challenge is his inability to walk independently. Recently, he had the opportunity to trial the Trexo robotic legs, a revolutionary mobility aid that would allow him the freedom to walk—something he will not achieve on his own. The Trexo robotic legs would help Charlie develop leg and core strength, increase his endurance, and improve his ability to bear weight, all of which are crucial to his overall physical health and development.

The benefits go beyond physical health. The true power of the Trexo robotic legs lies in the freedom they provide Charlie. Rather than being pushed in a wheelchair, Charlie would have the ability to walk independently and opportunities to engage more meaningfully with the world. He could walk alongside his family, friends, and peers which would allow him to connect in ways that are impossible with limited mobility. This independence would be transformative—not only physically, but emotionally. For Charlie, the gift of movement would offer a profound sense of autonomy and dignity, helping him develop confidence and a stronger connection to the world around him.

The road to this dream is not an easy one. The cost of the Trexo robotic legs is substantial with a price tag of $46 000. While insurance covers some of Charlie’s medical expenses, they do not often extend to items that significantly enhance a child’s quality of life. I am turning to Charlie’s incredible community and organizing this fundraiser to help alleviate some of the financial strain of acquiring this vital and life-changing technology.

These robotic legs would grow with Charlie, providing long-term benefits that will support him throughout childhood and beyond, offering him the chance to experience life more fully. Charlie is a warrior who has already overcome so many obstacles and continues to fight every day. The Trexo robotic legs would be an invaluable tool in helping him live the life he deserves, filled with movement, joy, and independence.

Charlie’s 4th birthday is just around the corner, on March 22. I am reaching out to you—Charlie’s village and beyond—to help give him the incredible gift of walking this year. Any help you can provide will make a tremendous impact, and the Chisholms are deeply grateful for your kindness and generosity.

If you’d like to learn more about the Trexo robotic legs, see the incredible benefits they offer, or watch sweet Charlie in action, please take a look at the attached link, pictures, and videos.

Trexo Robotics Website