Throughout our four years at Sanderson, Anna and I have had the privilege of having two very special people in our life. Eric and Mckenna Lowden are a part of the AU-IV program at Sanderson High School.
Eric loves hockey, LEGOS, castles, dragons, and classic rock. Eric is a friend to everyone he meets. Mckenna loves any Taylor Swift or Ed Sheeran song, and Bella, her service dog. We spend every day working with and spending time with Eric and Mckenna. No matter how the day is going, they always have a way of making our day better.
Both Eric (22) and Mckenna (16) are affected by Batten Disease and have been since they were young. Batten disease is one of fifty lysosomal storage disorders in which genetic mutations cause difficulty with the disposal of cellular waste. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids. Batten disease is a very rare autosomal recessive disorder that causes progressive neurodegenerative impairment characterized by blindness, seizures, personality and behavior changes, dementia, loss of motor skills and the ability to walk, talk, and communicate. Batten disease is further categorized by the particular gene it affects. Eric and McKenna are affected by the CLN3 form, or Juvenile Onset Batten Disease. Children affected by CLN3 develop normally for the first few years of life. The first signs of Batten present themselves as gradual loss of vision between the ages of four and seven. Vision will be completely lost within six to twelve months. By late elementary school age, affected children will demonstrate difficulty concentrating, retaining short-term memories, and learning. The next stage of the disease begins with the onset of epileptic seizures (typically around ten years of age). Seizures can be controlled with medication but they will always recur. They typically begin as motor seizures but the type and pattern will evolve with the progression of the disease. During the teenage years, those affected by Batten disease will become gradually more unstable on their feet. They will become repetitive in their speech and difficult to understand at times. Some people affected by Batten disease will see, hear, and feel things that aren’t real. As Batten progresses, the teenagers will become increasingly more dependent. It is important to note that the progression of Batten disease is extremely variable even for members of the same family. Ability varies daily as well. Death typically occurs between fifteen and thirty-five years of age. Batten Disease is a very rare disease. Only 1 out of every 12,000 are affected by it, so there is not as much funding for the disease as we wish there could be and what should be. This is one of the many reasons that this fundraiser is so important to all of us.
People who know Eric and Mckenna easily recognize how greatly this disease affects them, their daily life, their family. Organizations like the BDSRA (Batten Disease Support and Research Association) aid in funding for treatment, research, at home care, raising awarness, and advocating for legislative action. All of the money we fundraise will be donated in honor of Eric, Mckenna, and anyone else affected by Batten Disease. PALS Club has done an amazing job raising money for the Autism Society, Special Olympics of North Carolina, and the BDSRA. This is our most important fundraiser and we are striving to raise as much money and awarness as possible. Many people don't know about this disease, but it is time for people to become aware of its effects. Even though it may be rare, it greatly affects anyone who has it. Please feel free to donate or ask friends and family! We thank you for the thought and support!
-Rachel and Anna
