About Tyler
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, there was an answer. Tyler was diagnosed with Juvenile Batten Disease (CLN3), an extremely rare and cruel 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 10 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!
Mission Milestones
A Sister's Story
ContentMy brother, Tyler, has always been the most energetic happy little boy I have ever been around. He never runs out of things to do or things to say...Veteran's Day Appeal
In the spirit of Veteran's Day celebration and in support of a veteran family in need, please like and/or share this video story with your friends.2018 Annual Newsletter
We want to take a moment to extend an enormous Thank You for your support this year. Your financial support and especially your prayers have brought us to a point where Hope is becoming a reality.Tyler's Trip to NIH
Tyler spent 5 days at the National Institute of Health to participate in the CLN3 (Juvenile Batten Disease) Natural History Study.Text-to-Donate Campaign
In honor of Tyler's 10th birthday and to help increase awareness of rare diseases, Tyler’s Mission has established a text to donate program towards treatment research against Juvenile Batten Disease (CLN3). You can help by texting TYLER20 to 501501 for $20 donation to help save Tyler and other children from this terrible disease.Coins 4 a Cause
Tyler's school, Laurel Hill Elementary, raised $5643.70 for Batten Disease Research.Tyler’s Mission Supporters
Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Tyler’s Mission is partnering with BBDF to find a cure for juvenile Batten disease for Tyler and hundreds of other children.
The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!
Tyler’s Mission has a raised a total of:
I remember meeting Tyler when he was very young. He probably doesn’t remember me but he always made me smile.
I will be praying for a full recovery!
Sending our thoughts and prayers for Tyler and your family, Uncle Jimmy! Stay strong, and Go Tyler! -Alex &
Alice Kim (Bruce’s Family)
Dear Kim Family, The word for “life” in Hebrew is “chai.” It has the numerical value in Hebrew of 18. So, many jews give in multiples of 18. In this case, 18*10 or 10 times life.
Find success Tyler.
We love you guys. We will continue to fight this disease! Let’s find a cure. GO TYLER.
BEAT BATTEN!!
I remember meeting Tyler when he was very young. He probably doesn’t remember me but he always made me smile.
I will be praying for a full recovery!
Sending our thoughts and prayers for Tyler and your family, Uncle Jimmy! Stay strong, and Go Tyler! -Alex &
Alice Kim (Bruce’s Family)
Dear Kim Family, The word for “life” in Hebrew is “chai.” It has the numerical value in Hebrew of 18. So, many jews give in multiples of 18. In this case, 18*10 or 10 times life.
Find success Tyler.
We love you guys. We will continue to fight this disease! Let’s find a cure. GO TYLER.
BEAT BATTEN!!
I remember meeting Tyler when he was very young. He probably doesn’t remember me but he always made me smile.
I will be praying for a full recovery!
Sending our thoughts and prayers for Tyler and your family, Uncle Jimmy! Stay strong, and Go Tyler! -Alex &
Alice Kim (Bruce’s Family)
Dear Kim Family, The word for “life” in Hebrew is “chai.” It has the numerical value in Hebrew of 18. So, many jews give in multiples of 18. In this case, 18*10 or 10 times life.
Find success Tyler.
We love you guys. We will continue to fight this disease! Let’s find a cure. GO TYLER.
BEAT BATTEN!!