Bind Up Batten

at Beyond Batten Disease Foundation

Bind Up Batten

at Beyond Batten Disease Foundation

The Klein Family

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 Bind Up Batten 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. Bind Up Batten 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:

Contributor Comment
Marlo Parker Fenderson Supporting Bind Up Batten!
Mobile Giving Foundation Text Donations from February 2018.
Marna and Nicholas Kern Thank you to the newlyweds who donated the $280 collected from the dollar dash at their wedding!
Michigan Department of Corrections Thank you to the Michigan Department of Corrections, who collected donations and donated $365 for Bind Up Batten!
Birthday Bash for Batten Thank you to Kate Votava and Craig Hamilton of Chicago, who hosted a Birthday Bash for Batten and raised $1,300 for research!
Chel-Belle Bender Facebook Fundraiser in support of Bind Up Batten!
Blaire Albring Facebook Fundraiser in support of Bind Up Batten!
Adrienne Kersey Facebook Fundraiser in support of Bind Up Batten!
Mark Mathias In Honor of the Klein Family!
Emily Klump Supporting Bind Up Batten!
Eddie Huber In support of a strong, resilient family and to Binding Up Batten!
Matt McGraw Supporting Bind Up Batten!
Blaire Albring Facebook Fundraiser in support of Bind Up Batten!
Adrienne Kersey Facebook Fundraiser in support of Bind Up Batten!
Chel-Belle Bender Facebook Fundraiser in support of Bind Up Batten!
St. Patrick’s Fundraiser Thank you to everyone who attended and donated to this fundraiser. With your help and generosity the event raised $5,436 for research!
Arthur Martin Supporting Bind Up Batten!
Carol Richmond In memory of your Dad/Grandpa. Lewis Solo, may he rest in peace. From your coworkers at University of Michigan Health System, OTPTTR
Molly Rippke To paraphrase Gandalf (one of the two greatest wizards of all time) we don’t get to decide what happens to us, “all we have to decide is what to do with the time that is given to us.”
Michelle Molnar In honor of the Klein Family, c/o John and Terry Klein!
Cathy Tippenhauer In honor of Sophia Fernandez’ First Holy Communion!
Bishop Fenwick High School Jean Collection Fundraiser in support of Bind Up Batten!
Joseph Klein Supporting Bind Up Batten!
Matthew Shank Supporting Bind Up Batten!
Deborah Barnard Pulling for you, Charles Klein! (From another PT and the mother of an Orthotist)
Brian Paulson Supporting Bind Up Batten!
Dawn & Andrew Hoffman Supporting Bind Up Batten!
Jean & Richard Brey Supporting Bind Up Batten!
Cathy Tippenhauer Thanks to Patti Bisher!!
Ed Steinman & Rita Mitchell Supporting Bind Up Batten!
Dolores Czerniak Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Jessica Miller Keep up the great work Jo and family!
Priyagi Mehta Lots of love to Charles and your family.
Abraham Dane May God strengthen your family and show you his grace. Praying for your whole family!
Erin Wallace Behind you all the way!
Angela Lefere Supporting Bind Up Batten!
Jo Klein Let’s move some miles to blow up Batten!
Sophie Manning Supporting Bind Up Batten!
Lynn Jasin Chris and I are thinking of you all. Our thoughts and prayers go out to Charles and the entire family.
Sarah Block Lots of love to you and your family, Jo.
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!