Thank you for visiting Chase The Cure. We appreciate your interest in reading the story of our son’s battle.
After a recommendation from Chase’s 1st grade teacher we had Chase seen by a pediatric ophthalmologist. Based on the results from the exam he referred us to a specialist in SLC, Utah. After additional, invasive testing the diagnosis came back as the very rare disease juvenile NCL or Batten disease. Loss of vision is the first symptom, then seizures, progressing to physical and mental incapacitation, requiring 24-hour care, until premature death in the teens to early 20s. Our family was caught off guard and absolutely devastated. The doctor informed us that at this time there is no treatment and no cure.
Let me introduce you to Chase. At the age of three, he renamed himself “Jasper the Champion Rider Shooter.” At age four we were allowed to shorten it to “Jasper the Champion.” Today he is nine and is known as Jasper and most people are unaware that his real name is Chase. He loves telling stories, the holidays, playing cowboy, teaching others and the animal, cows (among many). He amazes me every day, especially because his vision is impaired. He is considered legally blind and not once has he ever complained or felt bad for himself even though he is not able to see as well as his brother, family or friends.
After the diagnosis we began researching Batten disease. At the time neither of us had ever heard of it. We were in a state of shock and devastation. We don’t know how to explain what it is like to watch your active, social boy with an abundant personality with the diagnosis always in the back of your mind.
Together Chase the Cure and Beyond Batten Disease Foundation are spreading awareness and raising funds for medical research to eradicate this disease. We sincerely appreciate your time and consideration in seeking to understand Batten disease, how it affects families and how your support can help bring some peace of mind to those families. Please join our efforts by making a donation, supporting one of our fundraising events, or creating your own fundraiser via the link at the top of the page.
The Peterson Family