Zoe had her first seizure when she was six months old. Her parents, Kier and Tim Nicholson, went into their younger daughter’s room one morning and found her unresponsive and completely limp.
“I thought she was dead,” Kier recalls. They called 911 and went to Zoe, prepared to do CPR. They described her condition to the 911 operator, at which time the operator estimated that Zoe had most likely had an extensive seizure in the night.
The initial assessment of Zoe’s condition was epilepsy, a diagnosis which held up for three years until she went into BC Children’s Hospital for a five-day in-depth assessment. As part of the battery of tests Zoe was to undergo, a routine blood test was taken. It was then that the Nicholsons found out their daughter suffered from a chromosomal anomaly known as Ring 14 Syndrome.
Ring 14 is a syndrome in which the two ends of the fourteenth chromosome fuse together to form a ring shape. The manifestation of this extremely rare condition varies from person to person. It is most commonly characterized by treatment-resistant seizures along with some level of learning disability, delayed development of speech and motor skills, and low muscle tone.
Zoe is now six years old and an vibrant member of her Grade 1 class. Although at the time of this writing Zoe has been without seizures for approximately a month, she typically has seizures three to five days a week. She is on three different medications which need to be constantly monitored and adjusted to help manage her seizures. Zoe’s speech has been delayed, she communicates primarily through sign language and is working very hard at her speech therapy. Zoe also undergoes occupational therapy to help her manage other challenges.
Due to the rarity of Ring 14 Syndrome, the costs associated with the management of this condition are not automatically covered. Thankfully, Zoe has received coverage for her medications over this past year, but therapies and other incidental costs are not currently covered. After a heavy night of seizures for Zoe, Kier’s friend Heather Maricle witnessed Kier lift and carry the now 70-pound Zoe. It was then Maricle began to plan the benefit concert to “Help Zoe.”
The “Help Zoe” benefit will be held on Feb. 2 at the Shirley Community Hall. The goal is to raise funds for a hospital bed for Zoe’s room, as well as donating funds to a program called MiMi’s House. MiMi’s House is a community pediatric respite home that Zoe stays at once a month, allowing Kier and Tim to spend much-needed one-on-one time with their older daughter, Oli. (www.crss-victoria.ca/mimis_house.htm)
The benefit will include a silent auction of items donated by local businesses and artisans. There will be five different bands to dance to, and Norte Street Food will have delicious tacos available.
This is an all-ages event that promises to be a rockin’ good time.
Tickets are $10 and are available at The Stick in the Mud Café and Déjà Vu at the Breakers, with any remaining tickets sold at the door.
For more information, visit www.facebook.com/helpingzoe.