Garland Benson shared his story with the world last night on CBS News, calling on each of us to help put an end to Batten disease and not just save the life of his sister, Christiane, but all those living with this traumatic and fatal illness. Click the story links below and discover how this incredible young advocate and loving brother took it upon himself to raise the final $1 million of a $6 million campaign to fund an FDA approved clinical trial.
Bianca Vidal recently wrote to us and was kind enough to let us share her story. Let’s give her and her son a warm welcome.
“My son Manuel is a 17-year-old young man who was recently diagnosed with this terrible disease. Even though at 10 years old he started losing his vision, I never imagine it could be something else. Last year his health started to decline dramatically – it was then that a Doctor found the disease in him. He is declining faster than I thought. He can barely walk and talk now, and he does not recognize who I am most of the time. It is heartbreaking to see him like this. Even though he has good and bad days, his positive attitude is always there. And he always has a big smile for everybody and loves to show off his ‘muscles’.”
A team led by researchers at Baylor College of Medicine has uncovered an unexpected mechanism that can explain a form of Batten disease called neuronal ceroid lipofuscinosis 8. The findings published in the journal Nature Cell Biology provide potential new targets for future therapeutic interventions for this rare and incurable disease.
Learn about Garland Benson’s BE a Hero campaign to raise a million dollars to fund a treatment for his sister who has juvenile Batten disease. He is so close to reaching his goal with only $124,000 to go and a few weeks of fundraising remaining! Support him and his sister with a donation today – Donate Now.
On Saturday morning, the weather was perfect just long enough for the Bensons to share some beautiful words of gratitude and to plant the “Triangle Oak” in honor of all of you. Thanks to those of you who came out. In case you weren’t able to be with us to include your name on the river rocks that were planted with the tree, we wanted to be sure to share their heartfelt message with you:
“They say the true meaning of life is to plant trees under whose shade you never expect to sit.
And, that’s exactly what you have done for our family! In our darkest hour, YOU planted this tree and placed Christiane beneath the only shade in an otherwise desolate and barren landscape. In a selfless act of compassion and love, you have supported us with an unfailing devotion to our family. And, after 10 years of hard work, and on the cusp of a clinical trial, you should be so proud for having put Batten disease on the map! There are simply no words to express the enormity of our gratitude for everything you have done over these last years.
Thank you to all who have supported Garland.
$790,466 and counting to $1 million!
by SUSIE EGR
This is our handsome son, Oliver James Egr. He is a big piece of our “why” and our superhero. He turned the big thirteen a few months back. When he was born I remember saying “Thank you God for all the abundance in our lives and for this sweet baby boy. He is perfect in every way and has now completed our family ”. He was the typical little boy- ornery but so dang cute. When he started kindergarten we noticed he kept sitting close to the TV and he wasn’t always paying attention. We soon learned he had visual issues. That led to months of additional neuro and genetic testing. I vividly recall that horrific day we received his official diagnosis.- Batten Disease. The genetic company called me on the phone while we were driving to Iowa City for an eye specialist appt for Ollie. To say it took my breath away is an understatement. Darin pulled the car over while I continued to listen on the phone. Ollman was singing “the ants go marching one by one” in the backseat (Not a care in the world.. while ours was being turned upside down) tears instantly flowed from my face and Darin just knew the results weren’t good. I remained quiet as I didn’t want to worry Ollie. That was the longest drive of our lives. After I got the news Dare and I just sat there holding hands with tears streaming. I felt helpless. “No cure….Fatal” is all I heard and it just kept playing over and over in my head.
Ollie lost his complete vision 6 months after that appointment. Over the years we have seen this disease not only rear it’s ugly head in our son but take the lives of so many innocent, sweet kids. These affected families have became our extended family now. THIS HAS BECAME PERSONAL.
My faith is strong and I remind myself frequently that our loving Father loves this child more then I will ever comprehend and he walks beside us daily as we fight the good fight. We feel his presence and see him through the kindness of others. That gives us hope. As parents we will never stop advocating for Ollie and the Batten community because they need us! What also gives us hope is putting our efforts towards funding a cure. We are so close!
With only four months to go BBDF and our Batten families are hard at work to fund the clinical trial! Take a moment to see what our next steps are and catch up with all of the activities of our affected families in our August Newsletter! READ MORE