Ashley & Ben’s Story

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 11 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.

We founded The LCC Foundation in April of 2022 to further research efforts being performed by Dr. Jamie Fraser in Washington, DC Children’s National Hospital. We are excited to raise awareness and connect with others who have been diagnosed.