Meet Our LCC Warriors
Alice
Greetings from snowy Nova Scotia!
After a fairly long journey of seizures, tests, medicine and MRI’s, Alice was finally diagnosed when genetic tests confirmed that she had LCC. The cysts and calcification in her white matter cause seizures , affect her vision, coordination and cognitive abilities. She works very hard at her high school classes and will graduate next year. She loves to listen to music, read books, watch movies and go on walks with her family and dogs. She hopes to go to college or university one day and maybe work with children. She wishes this disease did not exist as it makes simple daily tasks more challenging and she feels exhausted all the time. She hopes that more people will learn about this disease and better treatment or a cure becomes available though research being done to help all those affected by LCC!
Ben
Ben’s LCC journey begins when he was 5 months old. He had a 3 day period, on and off seizures that resulted in two hospitalizations with several tests done and no answers. He was prescribed an anti-seizure medication and sent home. Ben did very well after this, so was eventually weaned off of his anti-seizure medicine. He continued to grow, only with slight delays in sitting up, walking, and talking. Around age 7, he was having greater difficulty with walking and speech did not seem to improve despite therapy. Another MRI was done and it was determined there was progression of his condition. We looked to genetic testing for answers and that’s where we found it! A genetic condition affecting the SNORD118 gene that causes the condition LCC-Leukoencephalopathy with brain calcifications and cysts. Despite all his challenges, Ben is a happy 10 year old boy with the best smile! He loves spending time playing video games with his brothers, going to school with friends, and snuggling his puppy Heidi. He’s so excited that research is being done to find treatments and ultimately a cure for his condition.
David
David was diagnosed with LCC in August of 2022, at that time he was the youngest diagnosed at nearly 3 years old. He experiences brain calcifications, left sided weakness, and developmental delays which he attends occupational, physical, and speech therapy to help him. Despite his everyday challenges with the disease David is adventurous and very outgoing! He’s currently into all things space and says his favorite planet is Earth! David loves cars, dinosaurs, and playing outside. As his parents and older sister we’re hopeful for a treatment and ultimately a cure so that we can live a long beautiful life with him.
Evie Parkhouse-Denham
Evelyn (Evie) Parkhouse-Denham was a happy, extremely sociable and friendly girl, who loved life. She was a participant, not a spectator. She enjoyed swimming and being with her sister and friends. LCC/Labrune Syndrome caused a gradual deterioration of her health and sadly, in June 2020, she passed away at just 12 years old.
Christopher Ainsworth
Christoper Ainsworth was born in May of 1969 and grew up in Aurora, Colorado. He graduated college with a Bachelor’s Degree. He was employed in workforce management at Sprint and Blue Cross Blue Shield.
He was husband to Tammy and father to Austin. Chris faced many health challenges throughout his life. At the age of 5 he was diagnosed with Type 1 Diabetes due to seizures. It is now believed this was a misdiagnosis. He was diagnosed with LCC/Labrune Syndrome in 2013 at the age of 45 after becoming violently ill. There were cysts/calcifications and around those were fluid sacs that put pressure on his brain. He lovingly referred to these cysts as marbles in his head. He always had the best sense of humor. He would tell the doctors, 1more trip in the office and he gets a free donut! He started losing his ability to see in 2017 due to surgeries to remove cysts in the brain. He was always so strong and never complained. Despite all of his hardships, Chris lived life to the fullest with a smile on his face. He always had a positive attitude and encouraging words to give others.
