Winter 2025 Special Feature

A Gift in Phoebe’s Memory

Written with love and remembrance by Phoebe's mom, Annette Tate

On September 10th, 2014, our lives changed forever when our beautiful 8-year-old daughter, Phoebe, was diagnosed with Huntington’s disease—a rare, hereditary neurodegenerative disorder. While Huntington’s typically appears in adulthood, 10% of those living with HD suffer with Juvenile Huntington's Disease (JHD) with onset before the age of 20. Phoebe had the even rarer early-onset juvenile form (JHD), which affects fewer than 1% of those living with HD. In children as young as Phoebe, this form is tragically under-researched and heartbreakingly aggressive.

For five years, Phoebe endured unimaginable suffering. Her disease quickly stole her ability to walk, speak, and care for herself. Within a year, she was confined to a wheelchair and soon after needed total personal care. She could no longer eat or speak, relying on a feeding tube and losing the voice that once filled our home.

The relentless progression of her illness brought constant pain: muscle cramps, severe seizures, chronic discomfort, and uncontrollable movements. Phoebe endured insomnia, vomiting, incontinence, and needed dozens of medications just to manage her symptoms. Even with a Baclofen pump to ease her pain, the disease never let up.

As Phoebe’s disease progressed, she lost the ability to cough, swallow, and speak. The cough assist machine became essential for airway clearance, especially as she relied on a feeding tube and was at high risk for aspiration and pneumonia. The device helped manage chronic discomfort and reduced the frequency of respiratory complications, contributing to her overall comfort and quality of life. Even with advanced symptoms of her disease —severe muscle cramps, seizures, and total care needs—the cough assist provided a measure of relief and dignity.

Phoebe’s story is one of remarkable warmth and empathy. Despite facing unimaginable hardships due to Juvenile Huntington’s Disease, she radiated kindness and compassion. Her love for animals, especially horses, was a defining part of her personality. Even as her illness progressed, Phoebe’s gentle spirit and playful mischief continued to touch those around her. She was known for legendary hugs and a unique ability to connect with people—sometimes even those she never met in person. Her journey inspired many, both in her immediate communities and online, where her story was followed and supported by countless individuals.

In 2019, at just 13 years old, she passed away peacefully at home, surrounded by love. We always referred to Phoebe as being on a journey, and we are so proud to say that she was never alone on that journey and the immense support provided by so many will always be remembered.

In her honour, a cough assist machine has been generously donated to support the training of future medical professionals. May it serve as a tool of healing, learning, and compassion. May every hand that touches it be guided by skill and care, and every mind that learns from it be inspired to serve with integrity and empathy.

We are deeply grateful for the donation of a cough assist machine in honour of Phoebe. School students will benefit from direct training in essential respiratory techniques and paediatric care. This resource will help prepare them to deliver skilled, informed support to children with significant health needs. ~School instructor, Jennifer McPhee