Congratulations to all 2023 High School Graduates!
We would like to send special congratulations on behalf of the community to Lilly Sorette for graduating Grade 12. We are so proud of you and all the work you have done to educate others about epilepsy and hope that you continue to share your story.

Epilepsy is the second most frequent neurological condition (after migraines) that affects 1 out of every 100 people. – Statistics from the Canadian League Against Epilepsy

This month, the MyCedarbrae Blog features Lilly Sorette who experienced her first seizure 5 years ago on an early December morning. After numerous hospital visits and tests Lilly was diagnosed with Generalized Epilepsy, which requires constant supervision and affects every aspect of her and her family’s life. As a stigmatized neurological condition that has an array of misinformation associated with it, people don’t see that it is so much more than just seizures. Keely Sorette, Lilly’s mom, explained that there is so much more to epilepsy than just seizures as it is the only visible part of the diagnosis, “People think epilepsy is just seizures, take some medication, and you’re done. When in reality, the seizures are just the exposed top of a huge iceberg and there are miles underneath it all full of daily symptoms and side effects. There is so much more to it.”  

Since Lilly’s epilepsy diagnosis, her and her family have made it their goal to raise awareness and funding for this incredibly life-changing yet common neurological condition. Whenever Lilly meets someone new she introduces herself by stating her name and telling them that she has epilepsy in hopes of educating others, “We like to talk about it as much as possible when we meet people.” For Lilly, introducing herself alongside her diagnoses is an icebreaker that encourages open dialogue and a safe space for people to ask questions about her and her experience. The Sorette’s also educate people on the importance of knowing epilepsy first aid to minimize the misinformation that has been spread over the years, “An injury from the seizure is what is actually most dangerous.”  It not uncommon for the person to hurt themselves during a seizure, sometimes they hit their head on the floor or on surrounding furniture, dislocate limbs, burn themselves while cooking on the stove, fall down stairs, in the shower, the swimming pool, aspirate water, and even choke on food; “those are all things that we have to be there for [during her seizures],” says Keely.

Teenage independence is one of the main things that Lilly misses out on as she does not have seizure warning signs, also known as an aura. So while other grade 12 graduates have their driver’s license and are either at the mall, a friends house, or regularly attending parties on the weekends, Lilly keeps herself busy with various hobbies as she does not let epilepsy define who she is as an individual. In her spare time Lilly can be found playing ringette in the winter, riding her bicycle around Cedarbrae in the warm summer months, or winding down by reading and watching anything World War II or True Crime related. As the oldest of two sisters, Lilly’s quick wit and sense of humour makes her the lovable peace maker of the family.

Epilepsy First Aid
One of the most important things to do when someone around you is experiencing a seizure is to stay calm, and follow the three S’s of seizure first aid: Stay, Safe, and Side!

1. STAY with the person throughout the seizure, time the seizure
   2. Keep the person SAFE from injury or harmful objects
   3. If the person is lying down and unconscious, turn them onto their SIDE in the recovery position. When the seizure ends, provide reassurance and stay with the person if they are confused.

Call 911 if:

• the seizure lasts more than 5 minutes
• the seizure repeats without full recovery between seizures
• the person is pregnant or has diabetes
• the person is injured from the seizure
• the seizure occurs in water
• you are not sure if the person has epilepsy

-Information from the Canadian Epilepsy Alliance

It is important to NEVER:

• restrain someone experiencing a seizure
• put something heavy on top someone experiencing a seizure, such as a heavy blanket or pillow
• or put something in their mouth, such as a spoon, belt, or finger

For more information on epilepsy, please visit the additional links below:
The Epilepsy Association of Calgary is a charitable social service agency that addresses community, individual and family needs related to epilepsy. They have served more than 30,000 people living in Calgary and Southern Alberta since 1955 and continue to improve the quality of life for people living with epilepsy due to their innovative programming and support services.

Epilepsy Canada is a registered Canadian charity dedicated to positively affecting the lives of those living with epilepsy. It’s sole mandate is to raise funds for epilepsy research with an objective of finding a cure. It demonstrates the need for research by highlighting key issues related to those whose seizures cannot be controlled through existing medication and treatments and the tragic cases of SUDEP (Sudden Unexplained Death from Epilepsy). Through its active financial support of epilepsy research, it strives to help the Canadian neurology community find a cure for epilepsy.

Cancer is never an easy topic to talk about, but childhood cancer adds another level of complexity when trying to teach others about it. When asked what she would like others to know about childhood cancer, Lisa Lombardi wishes that people were more open and willing to learn about it, “You do not hear much about [childhood cancer] because nobody wants to talk about it and it’s uncomfortable for people who don’t know what it’s like.” As a parent to Chloe, who was diagnosed with a rare form of white blood cell cancer, Lisa is able to identify every hospital stay, test, and procedure that Chloe underwent once being admitted into the hospital in March of 2021.

Lisa describes Chloe’s diagnoses as being out of the blue, “We thought she had the flu, [as] she just stopped eating and her hands were sore… but she’s never really had a huge appetite so we didn’t think much of it.” They then went to the hospital after a week and the doctors took some samples but assumed that Chloe had an infection. The doctors assured Lisa that the infection should go away on its own, but if Chloe’s symptoms worsened then she would have to come back for further testing. Another week went by and Chloe still wasn’t eating. After trialling a day at school, Lisa got another call from the school saying that Chloe has gotten sick again. After that phone call, Lisa picked Chloe up from school and brought her straight to the hospital where they immediately did bloodwork, “Because of her chromosome deletion they thought maybe her kidneys were infected… within an hour, they were able to diagnose it as blood cancer.” Unprepared and in shock, Chloe was admitted to the Children’s Hospital that day. 

Once Chloe was diagnosed, both her and Lisa were in the hospital for months at a time for treatment and the recurring side-effects that followed. It was a difficult adjustment for the entire family as her step-dad, Travis had to stay at home to look after her baby brother and sister during the pandemic for remote learning, limiting stable work hours for Lisa and Travis and cutting down on the family income. Although Chloe will officially be in remission as of April 14th, 2023, Lisa says that it has been hard to be social and get back to a normal life. Throughout Chloe’s treatment, both Lisa and Travis found it was difficult to relate to others who did not understand their situation, and have fallen out of touch with friends and even some family members as a result, “People do not realize that the years pass but your entire life stops.”

During treatment, Chloe received a bead for every hospital stay, needle, and procedure that she experienced throughout treatment, amassing 2,396 Beads of Courage. The Beads of Courage organization is a non-profit that provides medical and arts based programs for children and families undergoing medical treatments as they strive to ‘model collaborative strategies to strengthen human connectedness through the gift of beads that bestow honour and express human caring.’ Although Chloe’s beads are a tangible representation of her bravery and strength, the string of beads also represents a thread of ‘support and connection for those affected by their loved one’s diagnosis.’ To Chloe and her family, the beads are a symbol for the many healthcare professionals that not only provided medical support but were also like family to them throughout treatment. It’s clear that the friendships that were created from the medical community and cancer support groups will stay with Chloe and her family forever.  

Join us for our first Community Carnival, Cedarbrae Celebrates Chloe on June 3rd, 2023 from 12:00-4:00 PM to as we celebrate Chloe’s cancer journey. As a family that has been in Cedarbrae for generations, the community centre is proud to announce that all net profits from the Carnival Games and Petting Zoo will go towards Chloe and her family for costs associated with treatment and recovery. See our events page for more information!