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.