Let's help Kinsley fight LSH!

Hello everyone,

As a close friend to Kinsley and her family, I want to share with you Kinsley's story. I am reaching out to you with hope and gratitude in my heart.

Kinsley is a source of boundless joy and inspiration in her family's life. Despite the challenges she faces, her spirit remains resilient and full of light. Her laughter is infectious, and her determination is nothing short of remarkable.

Kinsley was born with two rare brain disorders: Lissencephaly and Subcortical Band Heterotopia (LSH). These conditions have made every day a battle, but Kinsley faces each one with resilience that leaves us in awe.

On April 22nd, Kinsley was required to undergo a major brain surgery to treat the Tonic-Clonic (grand mal) seizures that resulted in her losing consciousness and experiencing violent muscle contractions. The intense seizures that Kinsley experiences, is only but one symptom of her brain disorder. She also experiences recurrent aspiration pneumonia, severe developmental delay/intellectual disability, behavioural difficulties, visual and hearing impairments, low muscle tone, ongoing eating and food consumption challenges. Her chronic seizures have caused brain damage, which has resulted in a regression in her development. She has been prescribed many different medications but so far, her severe epilepsy has been proven to be drug resistant.

Kinsley experiences hundreds of these types of seizures throughout the day and night. The hope is that this brain surgery will help to decrease the number of seizures she experiences, but her epileptic symptoms will continue to exist throughout her life.

Kinsley remained in the SickKids Hospital in Toronto until approximately two weeks ago when she was transferred to the Holland Bloorview Kids Rehabilitation Hospital and is not expected to be discharged until the end of July 2024. Kinsley is trying to re-learn some of her lost functions and individual activities to daily living. There is a likely chance that she may never be able to walk or eat on her own again. She will require ongoing assessments and monitoring by her pediatric health team, which will require regular back and forth trips to Ottawa and Toronto.

One of the biggest challenges Kinsley's family faces is creating a safe and accessible environment for her when she becomes discharged. They will need to update their home to accommodate Kinsley's needs, including incorporating equipment into accessible bedrooms and washrooms, widening living spaces, building a ramp, and making necessary adjustment to ensure she can navigate her surroundings with ease.

Your support can make a world of difference for Kinsley and her family. By donating to this fundraiser, you're not only helping to cover the costs of medical expenses, therapies, and medications, but also providing Kinsley with a home where she can thrive. Together, we can ensure that Kinsley has every opportunity to reach her full potential and continue to spread joy with her infectious spirit.

Thank you for your kindness and generosity.