Born two months premature, Gemma Bostik endured a difficult introduction to this world. Born by emergency cesarean at BC Women’s Hospital, she required immediate resuscitation and suffered from bilateral femur fractures and a brain bleed.
Amanda and Charlie Bostik were shocked when doctors gave them the news that their precious daughter had a rare neuromuscular disorder when utero checkups only revealed a likelihood of clubfoot.
It was the beginning of an extremely difficult 10-month journey in the Neonatal Intensive Care Unit at Children’s where Gemma developed a number of conditions and required multiple surgeries.
Despite all her medical hurdles, and with Gemma’s parents by her side, she faced these challenges with resilience and showed a strong will to live.
Because of weak muscle tone she received a tracheostomy for ventilation support as well as a feeding tube. Due to her traumatic birth she developed a condition called Hydrocephalus (excessive fluid in the brain) requiring surgeons to insert a permanent shunt that would safely drain the fluid.
Gemma continued to defy everyone’s expectations and on December 22, 2010, after 307 days in hospital, the Bostiks welcomed their amazing daughter home.
Since coming home, Gemma has been thriving and achieving more than thought possible. Through the support of her parents, therapists, and caregivers at BC Children’s Hospital and Sunny Hill Health Centre for Children, Gemma went from extremely minimal movement to having full anti-gravity movement in all limbs, partially sitting up, rolling over, communicating through sign language, and problem solving.
“I remember the hospital telling us our little girl wouldn’t have ‘purposeful movement’, and she sure proved them wrong. Shortly after our daughter came home she was evaluated at a year corrected and was cognitively and developmentally that of a six-month-old. Less than a year after being home she had caught up to that of a two-year-old. The same doctors now tell us how amazing she is and how far she has come,” says Amanda.
The Bostiks were armed with the medical training needed to provide all of Gemma’s cares at home. Prior to Gemma’s discharge they relocated to a wheelchair accessible home in Richmond and Amanda left her employment permanently in order to care for Gemma full time.
“Gemma is such a gift; she teaches and inspires everyone around her every day and she makes me a better person. I help advocate through her to bring about positive change,’” says Amanda. Amanda & Charlie advocate for doctors to trust parents’ instincts and views, and to treat all children as individuals. “We chose her middle name ‘Neselle’ because she is exactly what it means: ‘Miracle-Girl’.”
The Bostik’s are thankful to BC Women’s Hospital, BC Children’s Hospital and Sunny Hill Health Centre for Children, for all of the care and specialized clinics that provide support for Gemma’s complex needs.