Living beyond expectations: Haylee’s journey with SMA Type 1 

As Spinal Muscular Atrophy (SMA) Awareness Month shines a light on the realities of living with SMA, Haylee’s story stands as a powerful reminder of what love, advocacy and community support can achieve. 

This October, Haylee will celebrate her 18th birthday. She is the longest-living child with SMA Type 1 in Ontario and tied as the second longest-living in Canada. Her family lovingly refers to her as an “elder” within the SMA Type 1 community, a distinction few children with her diagnosis have historically reached. 

SMA is a rare genetic condition that affects the nerves that control muscle movement. In simple terms, the body cannot produce enough of a protein that motor neurons need to survive, causing muscles to become progressively weaker. SMA Type 1 is the most severe form, typically appearing in infancy. Children with Type 1 often struggle to sit independently, hold up their heads, swallow and breathe. 

Haylee’s symptoms began when she was just a baby. Amanda noticed her daughter seemed weaker than her three older siblings, had difficulty holding her head up, sweated excessively and breathed heavily. At six months old, after several frightening medical emergencies, including a cardiac arrest that required resuscitation, Haylee was diagnosed with SMA Type 1. At the time, the outlook presented to families was bleak and the standard approach for many children with SMA Type 1 was very different from today’s care options. 

Amanda refused to accept that her daughter’s life should be measured by limitations. “I wanted to give Haylee the dignity to live and make her as comfortable and happy as she can be,” she shares. She researched relentlessly, connected virtually with SMA families around the world and advocated fiercely for care that would allow Haylee to live, not simply survive.  

A turning point came through the support of Dr. Forte at The Hospital for Sick Children (SickKids). While tracheostomies for children with SMA Type 1 were highly controversial at the time, Dr. Forte listened to Amanda’s goals that were achievable with a tracheotomy. Her goals were simple: she wanted a way to feed her daughter, help her breathe, andbring her home. He supported Haylee’s tracheostomy, enabling her to receive a feeding tube and eventually leave the hospital. Amanda credits his willingness to trust parents and think differently as life-changing. Dr. Forte continued to follow Haylee’s journey long after her surgery and remained a cherished part of her story until his passing in 2024.

Haylee has been living at home surrounded by the people who love her most since infancy. Her days are supported by a ventilator, tracheostomy, feeding tube, wheelchair, cough-assist machine, oxygen, nebulizer, specialized bed and a dedicated team of nurses. Despite her physical limitations, Haylee is bright, opinionated and joyful. She loves the colours pink, purple and yellow. She enjoys Dora, plays video games using customized switches and effectively communicates her desire to be included in decisions about her care. 

Haylee’s success at home has helped transform care for families worldwide. At just five years old, she became part of an international initiative demonstrating that children with SMA Type 1 could safely thrive at home rather than remain in intensive care units. Families and healthcare teams from around the globe visited virtually and in person to learn from Haylee’s home-care model, helping pave the way for many children to return home to their families. 

Throughout this journey, Grandview Kids has been a constant source of support. From occupational therapy and customized equipment to opportunities for social connection, Grandview Kids helped Haylee participate more fully in life. Amanda is especially grateful for social worker Stephanie S., whose willingness to listen, share resources and value the family’s expertise made a lasting difference. 

Amanda’s advice to parents and caregivers of children with SMA

• Reach out to your community and connect with SMA support groups. 
• Learn the standards of care and be proactive. 
• Ask questions and advocate for your child. 
• Trust your instincts and trust your child. 
• Remember that your child knows their own body and care needs. 
• Don’t be afraid to use available resources and supports. 
• Make cough-assist therapy a priority. 
• Find balance between modern medicine and everyday wellness. 
• Most importantly: “You’re going to be okay. It’s going to be okay.”