Welcome Champions! I would like to introduce to you Anna Weber. Anna was born August 31, 2010, a day when the heavens poured rain, thunder rolled and the lighting strikes were unimaginable. The world, however, gained the happiest, fiercest little girl, a champion! Anna, your typical, developing little girl had days filled with friends, family, and activities. Anna was 8 years old when during our drives down the road looking for wildlife or a bright moon in the night sky, she began searching to see the deer, turkeys and moon. She sat closer and closer to the TV, but never once complaining about her vision. In 2019, a return visit to the optometrist raised a question, had she ever had a severe concussion? When the answer was no, we were sent directly to Iowa City. In January of 2020 Anna was diagnosed with CLN3 Batten Disease. Anna is a champion advocate for her needs. She continues to challenge herself on a daily basis. She participates in swim team, water and snow skiing, wrestling, and cross country. At the age of 14, Anna will cry from time to time knowing she won't be able to drive the cruising car with her friends, but we always come back to "today is a good day!" Anna doesn't know a stranger. She greets everyone with a smile, hug and a most happy sounding "HI!" Anna is hopeful for a cure for Batten disease, but getting her vision to remain or get better is her driving force. As she continues to participate in athletics she will tell you, "Sometimes it is really hard, but in order for my cells to stay clean and for me to keep my vision I have to keep exercising. It is healthy for me!" She does not forgo a smile. We have no idea what the future will bring, but what we do know is, today is a good day!
BDSRA was the first organization that took the time to talk to me as a grieving mother. They were very honest about the how rare batten disease is, but provided me with a timeline of where BDSRA was going. I have attended several Batten Conferences in the United States and each time I leave with a sense of community, new friends, and hope! Donations to BDSRA and batten research is what each and everyone of us families needs to have a future for our batten babes.
