In Memory of My Sister, Brittany

On June 1, 2012, my 28-year-old sister, Brittany, lost her battle with Batten Disease.

Brittany with our Dad, approximately 2009

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.

Brittany, age 5 1/2 months

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.

Brittany, age 2 years

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, 1993

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.

Brittany in 6th grade

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.

Batten's Disease & Research

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.

Comments

  1. says

    Your sister was so beautiful Brandie. Such a touching tribute in honor of her memory, in addition you are spreading awareness of this condition to others. I will continue to pray for you and your family. Lisa

    • says

      Thank you, Abigail…I’m looking very forward to things calming down a bit. I’ve been feeling better the last few days, which led me to do this post today.

  2. says

    I so wish I could give you a big hug right now. What a sad story but a wonderful tribute to a sister who was so beautiful in so many ways. I’m so sorry you’ve had such a difficult year. My heart goes out to you.

  3. says

    Brandie,
    I can’t imagine the scale of loss you’ve endured lately. The first picture in this post is beautiful – I feel like I know a little of your dad and sis just by looking at their smiling faces.
    {Hugs}
    Carolina

  4. Fiona says

    Such sad news Brandie…I’m sure your sister had a wonderful life with a loving family – I can see that from the pic on your Blog. I am quite a new subscriber and love your posts.
    Sending you hugs and prayers.
    Fiona.

  5. says

    I am so sorry for your many losses of late.
    As someone who *woke up* one day to find a whole new body waiting for me after a horrific car crash, take some comfort in knowing you helped make her life enjoyable and gave her love. She felt that. This I know. It’s a wonderful gift to give.

  6. says

    Oh goodness, I am so sorry for your loss. You have had a tough year!! oy. I’m so happy knowing that your dad was there to greet her when she arrived…

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