Celebrating the Lives of Lauren and Hannah

music Batten diseaseMany, many moons ago as a very young music therapist, I offered “Summer Music Camp” as a way to get the word out about my services.  One call came from a mom named Russ.  I can still hear her voice on the phone:  “Why don’t we have it at our house?”

I had met her older daughter, Lauren, the previous school year.  After having been taught in a typical classroom until that point, Lauren was struggling with a transition to a classroom for children with special needs.  Music with “Miss Kathy” was the first time she willingly participated with her new classmates and was the start of very long and special relationship.

Both Lauren and her younger sister, Hannah, had a neurodegenerative disease called Juvenile Neuronal Ceroid Lipofuscinoses (JNCL), more commonly known as Batten disease.  After experiencing a typical and sensory rich childhood, they both started to first lose their vision, then slowly — very slowly — their ability to speak and their ability to control all motor skills.  Their intelligence and indomitable spirit remained intact.


Hannah’s and Lauren’s mom knew the incredible power of music, and it didn’t take long for the rest of the girls’ treatment team to observe how music and rhythm were able to prompt speech, calm nerves on days when anxiety was at its peak, and provide a reliable cue for eliciting movement.  Soon, both girls had music therapy on their IEPs.  Music based learning and an amazing team of professionals gave these girls the quality of life that all kids deserve and in turn, they gave us much, much more.

It has been a long journey, a journey full of frustration, horrifying moments, incredible blessings, much humor, and many friendships.  Hannah and Lauren were amazing teachers and my life is richer for having known them and their remarkable parents, teachers, and therapists. I know that’s a bit of cliché, but it is undeniably true.

Lauren left us back in 2008 and Hannah and I both provided music for her funeral.  At the age of 25, Hannah got to leave her malfunctioning body behind last week.  Three music therapists came together again to provide music and healing for this extended family.  I can imagine a joyful reunion filled with laughter and song as Hannah and Lauren are finally together again.

celebrating Lauren and Hannah

The impact these girls had on the world in their short lifetime is immensely far reaching. In addition to demonstrating the incredible power of music way beyond what I had learned in college, this family has influenced me in countless ways to be a better parent.

Hannah and Lauren fiercely loved their books and all things musical, most notably Beatrix Potter, Rigoletto by Feature Films for Families and many classic musicals, all of which my children have now come to love.  This family has enriched my schema — the background knowledge I share with my children — and has made me a better therapist for the families I work with now.

They have taught me to keep things in perspective and not get upset with inconsequential things.  I feel blessed to count them as friends.

 music therapy Batten disease

2 thoughts on “Celebrating the Lives of Lauren and Hannah”

    1. Kathy Schumacher

      Maria, You are very welcome and thank YOU for being another remarkable family that has been an inspiration to me.

Comments are closed.

Shopping Cart
Scroll to Top