Pieced Together – A Mother’s Story

by AN ANONYMOUS BATTEN MOTHER

I grew up in a family of story tellers. Every get together involved reminiscing and sharing the same old stories. Most happened before my time, yet I’ve heard them so much it’s as if I was actually there.

Many stories involve my Dad, his two brothers and his sister.   Many include their childhood shenanigans. They would be playing in the house and something would get broken. They would do chores and something would get broken. They would move furniture to turn the living room into a football field and something would get broken. The result would be my grandmother grabbing the glue and putting it back together.

I know these broken things on her shelves. They weren’t matching sets or family heirlooms. They weren’t pieces that were priceless or irreplaceable. But they were special to her. So as things broke, she could have easily thrown them out, but she chose to piece them back together. Displaying them once again in hopes that no one would see the damage that had been done to them.

I often think about these broken knick- knacks and feel we have a lot in common. All it took was one visit to the doctor’s office to knock me down and shatter me to pieces. As the doctor revealed our diagnosis, I wasn’t even sure what he was saying. But when he said it will affect other parts of his body and his longevity, I literally fell to the ground. I was completely broken. Not the broken that leaves you in two pieces. But the broken that shatters you. Picture a glass dropped from the highest cabinet in the kitchen and exploding into tiny slivers everywhere. I was that kind of broken. How would I ever get up off the floor?

Then I thought of the words written by my sweet little boy just 4 days earlier on his Star of the Week poster…I am a star because “I never give up.” That was the glue that started putting me back together.

I walked out praying, you know the kind of prayer that sounds like a jumbled ramble of words that even if God was yelling from the top of his lungs to guide me, I wouldn’t have even heard him. It was that kind of prayer. But, He glued me together enough to put one foot in front of the other to walk out of that doctor’s office.

We came home and I looked at our daughter. How is this ever going to be ok I thought and the glue started letting loose. She hugged me and asked if we could cuddle on the couch together. She held me tight. Gluing those pieces right back together.

That night on one of the first of many sleepless, tearful nights I said to my husband, “What are we going to do?” He said we are going to get up and go to work and school, just like we do every other day. Our children deserve us to support each other and not fall apart. His love for our family was the glue that I needed once again.

The days to follow, 902 to be exact, I have fallen apart and been glued back together more than I can count. If someone looked closely, they would see that I am not who I once was. Just like the knick -knacks on my grandma’s shelves, I am together, but a little different than I used to be. But as pieces break off, God finds a way to glue me back together. He provides glue from my family, from the courage of Craig and Charlotte, from the kindness of Mary Beth, from the encouragement of Danielle, from the strength of Wayne and Missy, from the knowledge of the scientific researchers and from the promise that He has a plan the far outweighs my understanding.

Defying Gravity by Joe Sikorra

Long time BBDF supporter, Joe Sikorra has published a book and dedicated a portion of the proceeds to BBDF! You can snag a copy via Amazon, but remember to shop via Amazon Smiles (www.smile.amazon.com) so that .05% of your purchase will be donated to your favorite charity. You can purchase the book directly HERE.

This moving story shows how a family found joy after their hopes and dreams were shattered by the rare, fatal neurological illness of their two sons. Told by the family’s father, a popular Catholic radio host and marriage counselor, it recounts the way he and his wife received the courage and the support they needed to give their children abundant, fulfilling lives in spite of their gradual decline.

What initially seemed to be a tragedy for Joe Sikorra’s family became a story of human triumph, an outcome made possible by the compassion and mercy of God. Their example can help those facing unexpected losses and challenges to believe that by placing their trust in Providence they too can overcome hardships with the most powerful force on earth—God’s love.

Be a Hero on Fox 7 Austin

An Austin 13-year-old is determined to find a cure for a rare & fatal disease in order to save his sister’s life. And University of Texas quarterback Sam Ehlinger is helping him. Watch the story with Amanda Salinas HERE!

BBDF Funded Research Featured in Nature Communications

BBDF is very proud of the research we have funded over the last 8 years.  We are especially honored to have worked with Drs. Marco Sardiello, Michela  Palmieri and their colleagues at Baylor College of Medicine and the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital.  These researchers are devoted to helping patients with Batten disease and are vital partners in our efforts.  We are delighted that their work was published in Nature Communications this week.  Nature Communications is ranked in the top .04% of 28,000 subject journals. Read  the article: http://www.nature.com/articles/ncomms14338.

The paper is important to the understanding of how healthy cells manage waste disposal, but also because it proves an important concept for treating juvenile Batten disease in mouse models, propelling us forward down the drug discovery pipeline.  Today, BBDF is building on this discovery by working on industrial validation and dosing studies with Evotec, a drug discovery alliance and partnership company, to quickly advance Dr. Sardiello’s findings through the regulatory process, and ultimately to clinical trials.

Dr. Sardiello and his team have made a significant discovery and taken a giant step toward our collective goal to treat Batten disease.  We are grateful to him and his team for their dedication and perseverance.  In response to congratulatory emails, Marco had this message for BBDF donors, “We are proud to be working with you! This could only happen because of your continuous support.  More news coming in the next few months… stay tuned!”

To read more:

Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital press release:

http://nri.texaschildrens.org/faculty_research/sardiello_natcomm.aspx

Baylor’s press release:

https://www.bcm.edu/news/molecular-and-human-genetics/research-strategy-juvenile-batten-disease

BBDF Research Featured in Houston Chronicle

Six years ago, doctors told Missy and Wayne Herndon their 6-year-old son had a rare genetic disorder. The boy would soon be blind, they said. Cognitive ability would go next, slowly over time. And then, probably in his teen years, Will would die.

There was no cure or even research money for Batten disease, a condition affecting fewer than 1,000 children across the world. Nothing to be done, doctors said, but wait.

To read the full article click HERE.