I wish to meet Freya Skye
Sydnie, 16
nervous system disorder
16-year-old Sydnie loves singing, dancing, and dreams of one day becoming an actress. Her joyful passion for the arts was suddenly challenged when, at nine years old, she began experiencing seizures. These seizures presented as focal aware and focal unaware seizures – meaning that sometimes Sydnie was conscious and alert and other times she was not, leaving her feeling confused. It also made diagnosing her episodes as seizures challenging as they presented a lot like anxiety and panic attacks. Sydnie’s epilepsy is refractory, which means it is not currently controlled by any medications. At the age of 13, she tested positive for Tuberous Sclerosis Complex (TSC), a rare genetic disorder that causes seizures in 85-90% of people with this diagnosis. “It was a devastating diagnosis because prior to this moment, we had no idea that this genetic mutation existed in our family,” Sydnie’s mom Sandi shared. It was and still is hard for the family to accept that this will affect their daughter for the rest of her life.
Sydnie has faced multiple different tests, lengthy hospital stays, many clinical trials and a scoliosis surgery. In June of this year she will have her third surgery within 12 months when a Vegas Nerve Simulator (VNS) will be surgically implanted into her brain. Although many days are still challenging, her family is hopeful that research continues to find new treatments for those facing the same diagnosis.
Lengthy hospital stays and recurring seizures meant Sydnie missed out on a lot of school and had to drop several classes because she fell too far behind. This also meant missing out on many social activities including eating lunch with her friends, having to leave her competitive dance studio, and everyday moments teenagers enjoy. Her wish gave her something to look forward to during this difficult year. Sydnie’s love of singing and dancing inspired her wish to meet singer and actress Freya Skye! “Having the concert and meet and greet to look forward to provided Sydnie a sense of optimism and excitement,” Sandi shared. “For the rest of our family, the wish was a bright spot in an otherwise very challenging time.” Sydnie has been listening to Skye for several years now and sees herself within her songs. She finds her music relatable and it inspires her to keep singing, dancing, and acting despite her illness. Sydnie’s favourite memory from her wish experience was sharing a video of her school dance that she choreographed herself – a solo to Skye’s song, “My Own Way”. After watching it, Skye expressed to Sydnie that she was a beautiful and talented dancer, a moment Sydnie will never forget. Throughout the evening, Skye found ways to make Sydnie feel special. Sydnie’s wish will continue to inspire her on her dark days, and we can’t wait to see her on the big screen one day!
