top of page

ARTIST'S JOURNAL

Search

Finding Healing After Child Loss in the "Wings of Love"

Updated: Aug 12, 2021



Wings of Love – a painted wood and acrylic sculpture, honoring the spirit of children gone too soon from our lives.


Inspired by a Personal Interview


Tara Gair, mother from Winnipeg, MB, shared her story of child loss after her daughter, was diagnosed with a rare terminal illness at age 4.


Mackenzie was born as a healthy little girl, and early development was normal. Around age 3, her speech wasn’t quite where it was for others her age, and medical professionals began looking into it. Shortly after that, she began having seizures. After many diagnostic approaches, a genetic test finally revealed a diagnosis of Batten disease.


What is Batten Disease?


Mackenzie was diagnosed with Batten disease, a condition caused by a very rare genetic mutation. It prevents the body’s cells from disposing of waste, which then causes cell damage and progressive neurological impairment.


A seemingly normal child can suddenly change and deteriorate quickly – a devastating shock to families. Mobility, sight, and speech are slowly stolen from a once vibrant child.


There is currently no cure for Batten disease. There is ongoing research into ways to improve quality of life and potential treatments. More information can be found through the Batten Disease Support & Research Association at www.bdsra.org



Living Life to the Fullest


The family sought treatment, they raised awareness of Batten disease, they advocated for the child, but the doctors told them there was nothing that could be done. The best thing they could do in the circumstances was to take their daughter home, live life to the fullest, and love her deeply.


Despite holding onto hope, they painfully endured the heartbreak of witnessing Mackenzie slowly slipping away from them. At the age of 9, Mackenzie passed on, knowing only love and unconditional support in her short life.


Through this time, Tara learned to love deeper, to understand with compassion, and to live for today. She shared her story through the website www.mackenzieshope.com – a way to connect with others, communicate and update as she was able to, to raise awareness, to document her family’s memories during those years, and to process her inner emotions through journaling.