Tyler’s fight against Batten Disease.
When Tyler was born in February 2009, it was one of the best days of our family’s lives. He was adored as the “baby” of the family and spoiled by his two loving older sisters. As he grew, he was active and social and seemed to have unlimited energy. It seemed nothing could slow him down.
Then some things started to change. When he was 5, he suffered his first seizure. A year later, his vision suddenly became very poor. Concerned, we sought to find answers to these unusual changes. In the next year and a half, Tyler would see multiple physicians, have a battery of tests, and be the subject of many consultations by teams of medical professionals.
Finally, after genetic testing, there was an answer. Tyler was diagnosed with Juvenile Batten Disease (CLN3), an extremely cruel and rare fatal neurodegenerative disease. Children with juvenile Batten Disease progress normally for the first 5 years. They then start to suffer progressive loss of sight, worsening seizures and eventually loss of motor skills and cognitive state. Ultimately, this disease takes their life in the late teens or twenties. Currently, there is no treatment or cure.
We are devastated.
However, while our hearts are broken, we are incredibly blessed that today, Tyler is in great physical and mental shape and extremely coordinated. Tyler is now 8 and loves playing outside, being with friends and family, enjoys the beach, playground, and swimming. While his vision is declining, he has enough to enjoy riding his bicycle, go-cart, and scooter, and loves to sing and dance. He brings tremendous joy and happiness to his surroundings.
But we know that time is not on our side. Our family and Team Tyler’s Mission is to find a cure and defeat Batten Disease. Donations to Tyler’s Mission go directly to critical research needed to find a cure and stop Batten Disease and keep children like Tyler going strong. As we go through this experience, we ask for your continuous prayers for Tyler and help to defeat this disease.
GO TYLER! BEAT BATTEN!
|11/28/17||Mary Beth Kiser||Welcome to Beyond Batten Disease Foundation. We thank you for your partnership in bringing a treatment to Tyler and all kids affected by Batten disease.|
|11/28/17||Brittany Thomas||We are excited to work with you to eradicate Batten disease.|
|11/28/17||Kasandra Keyes||Go Tyler! Defeat Batten!|