On June 1, 2012, my 28-year-old sister, Brittany, lost her battle with Batten Disease.
Brittany was a beautiful girl who was happy and loved to smile. She loved music and movies. Her favorite movies were animated ones — pretty much anything Disney or Pixar, and one of her most recent favorites was Happy Feet. She loved other movies like Jumanji and Mrs. Doubtfire. She loved the outdoors. She loved Mexican food and pizza. She loved Barbies and jewelry.
Because of the disease, she had a hard life and has suffered for many years. Batten Disease is rare (it affects 2-4 of every 100,000 births in the US) and most people have never heard about it. Even as I sat at her bedside the last week before her death, I found all of the doctors, nurses, and medical staff to be unfamiliar with it.
Batten Disease is a terminal brain disease. It is inherited. It started with Brittany losing her eyesight at about age 8 and progressed to seizures and decreased mental function. In the end, she was unable to walk or talk and lost all of her motor skills.
Brittany was totally dependent on others to take care of her. My dad, prior to his death in January, took care of her and did everything possible to give her a good life. He tirelessly tended to her every need and fought insurance companies for the services and medical equipment that she needed. He was heartbroken when her health took a major down turn and she had to begin living in a nursing home full-time. But everyday, he went to the nursing home and sat with her for hours.
There are no words to describe how much Brittany will be missed. Our family has known for a long while that this day would come, but there doesn’t seem to be any way of adequately preparing yourself.
What brings me peace right now is knowing she isn’t suffering any longer. I also imagine that she is with our Dad and our sister, Danielle…that there may be greater reasons to why we’ve lost 3 family members in such a short time.
I love you, Brittany. May you rest in peace now.
Ways to Help Batten Disease Families
To learn more about Batten Disease, I encourage you to visit the Batten Disease Support & Research Association. There is videos and lots of information available. In lieu of flowers, donations to the BDSRA made in honor of Brittany are also very much appreciated. You can also LIKE the BDSRA on Facebook and follow the BDSRA on Twitter.
If you wear makeup (or even if you don’t), here’s a wonderful way you can support the BDSRA and families affected by Batten Disease.
Marlena of MakeupGeek.com has also personally been affected by Batten Disease. Because of this, she’s created the Caitlin Rose Foiled Eyeshadow Pan. A bright amethyst purple with a foiled finish. 100% of the net proceeds from the sale of this shadow benefit the Batten Disease Support & Research Association.
Here’s a video where Marlena shares about Caitlin Rose, explains the story of this shadow, and even shows you a tutorial on how you can use it.