We thought nothing bad could ever happen to us again, simply because nothing is as heartbreaking as the death of one’s own child.
Six years after unexpectedly losing our three year old Max to a malrotation in his small intestines, we learned the devastating news that our second oldest son, Charleston, has juvenile Batten disease.
Batten disease is a rare and fatal genetic disorder that affects otherwise healthy children. The symptoms include blindness, seizures, cognitive decline and mobility issues. Currently the disease is terminal by the late teens or early 20s because there is no treatment or cure. Our family has joined Beyond Batten Disease Foundation and we are on a mission to change that.
Charles began having vision problems in preschool and he was fitted with glasses. Unfortunately, his vision continued to worsen, leading to a series of tests. In April 2017 genetic testing determined that he has Batten disease. Charles has three younger brothers who each carry a risk of having Batten disease, but none have been tested yet. We have chosen to focus on the “now” and enjoy every moment together, creating memories as a family.
Today, Charleston is eight and has begun to exhibit additional symptoms. However, he is still happy and active. He enjoys riding his bike and is even learning how to snow ski. With the help of technology he continues to excel in his second grade classroom. When Charles grows up he wants to be an engineer. He is our son, a loving brother to Gus, Leu, and Henry. He is a friend, a grandson, a cousin and a nephew. His determination strengthens us because if he’s not giving up then neither are we.
We have created the Bind Up Batten Fund at Beyond Batten Disease Foundation to spread awareness and raise funds for medical research to eradicate this disease. Together with the foundation and our community of supporters we are funding a treatment that slows the progression of the disease to help Charleston and all families who are affected by Batten. Please join our efforts by making a donation or supporting one of our fundraising events.
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. The Bind Up Batten Fund is partnering with BBDF to find a cure for juvenile Batten disease for Charleston 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!
Bind Up Batten has a raised a total of:
What Supporters are Saying:
|Trisha Guerrero||To a beautiful boy and a wonderful cause worth fighting for <3|
|Dorothy Apardian||Supporting Bind Up Batten!|
|Don & Dolly Smith Foundation||Supporting Bind Up Batten, courtesy of Jan Smith!|
|Jean Korcsog||Praying and hoping they find a cure for this disease.|
|Wynn Curry||Supporting Bind Up Batten!|
|Laura Bethard||Supporting Bind Up Batten!|
|Justin Engel||Supporting Bind Up Batten!|
|Anthony Hays||Supporting Bind Up Batten!|
|John Lien||Supporting Bind Up Batten!|
|Cara Rawlins||Supporting Bind Up Batten!|
|Betty Robenstine||Supporting Bind Up Batten!|
|Liz Hartley||Supporting Bind Up Batten!|
|Kate Votava||Lots of love to our buddy Charles! And to Gus, Leu and Henry! And all of the Kleins and Tipps! We know how strong all of your are and are sending our positive thoughts your way. xoxo|
|Tim, Riv & Liv Klein||Supporting Bind Up Batten!|
|Margaret Michel||Keep the Faith.|
|Meghann Houser||Thinking of you and your family.|
|Abigail Mencotti||All of you are in our thoughts and prayers.|
|Holly Houser||Supporting Bind Up Batten!|
|John & TJ Klein||Together.|
|Anonymous Donor||Supporting Bind Up Batten!|
|Rachael Craig||Supporting Bind Up Batten!|
|Holly Shuart||Supporting Bind Up Batten!|
|Ric Eakin||Supporting Bind Up Batten!|
|Holly Mierzwiak||Supporting Bind Up Batten!|
|Sophie Manning||Supporting Bind Up Batten!|
|Bridget Riehl||Supporting Bind Up Batten!|
|Colleen Crowley||Supporting Bind Up Batten!|
|Amy Klingler||Supporting Bind Up Batten!|
|Harriet Jones||Supporting Bind Up Batten!|
|Abigail Patricia||Supporting Bind Up Batten!|
|Hendrika Lietz||Supporting Bind Up Batten!|
|Ann Riehl||Supporting Bind Up Batten!|
|Emily Elizabeth||Supporting Bind Up Batten!|
|Dawn Allen||Supporting Bind Up Batten!|
|Lisa Aaron-Laco||Supporting Bind Up Batten!|
|Katelin Lott||Supporting Bind Up Batten!|
|Natalia Fernandez||Supporting Bind Up Batten!|
|Kelly Riehl||Supporting Bind Up Batten!|
|Rivka Razon||Happy Birthday Jo! Love you so much!|