Ella Sabine Casten
Born: June 10, 2010
Diagnosed with Spinal Muscular Atrophy (SMA) Type 2: August 12, 2011
Dear Colleagues,
My 11th year teaching in District 205 winds down and I find myself thinking about the many people, seen and unseen, that have reached out to my family in one way or another over the past nine months.
My name is Michael Casten. I teach 4th Grade at Lincoln School. My daughter, Ella, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2, just days before our students started this past school year. Prior to walking into Lincoln only a handful of people knew of Ella’s condition. Word spread quickly as people began wondering what they might do in order to show their concern and care.
SMA is a progressive, degenerative, terminal disease that has a prevalence rate of every 1 in 6000 live births being affected. One in 40 people are carriers of the recessive gene responsible for this devastating disease. To date, there are no treatments and no cure. It has been named the #1 genetic killer of children (under the age of two) alongside being the #1 neurological disease (of over 600) that is closest to a cure.
In general, SMA causes the motor neurons responsible for voluntary movement, as well as muscles responsible for eating and breathing, to slowly die--causing extreme atrophy of muscle groups and eventually death; oftentimes children die due to respiratory complications.
My wife Lindsay (a former Lincoln School Teacher) and I found ourselves extremely fortunate to be part of a community that has opened their hearts and goodwill to us. We are still overwhelmed with positive emotions regarding how so many of you have shown your care, concern, & compassion.
Whether you thought of us, offered a prayer for us, participated in an event to raise funds, dropped a note to us, lent us an ear, a smile, or a shoulder, spoke with others about us, read our blog, shared our blog, or are reading this and learning about Ella for the very first time…we cannot find the words that truly express our feelings of gratitude and comfort that fills us when we think about you and all you have done.
To date, Ella continues to develop cognitively as any other typical child her age. She loves to play with her siblings, sing songs, and count. She joyfully plays with her favorite toys, watches her videos, and explores her world (in a 311 lb power wheelchair!). Physically, Ella works wonders with the challenges that face her. She keeps a spirit about her that draws people close—to her and to each other. Her world of physical care is constantly changing as her disease progresses and she accepts it with grace and good nature.
As the summer drapes itself over us we will all go our separate ways until the next school year. Some of us will see one another, others will disappear into the months ahead, and still some of us will be enjoying the fruits of retirement. Wherever you find yourself we sincerely hope that the incredible care, concern, and compassion you have afforded our family these past nine months meets you in the places you find yourselves.
Sincerely,
Michael, Lindsay, Ava, Henry, & Ella Casten
P.S.
One of our goals since Ella’s diagnosis is to spread awareness about SMA. Until our daughter was diagnosed, neither of us, nor our family and friends, had ever heard of this terrible disease. We strongly feel that awareness fuels the engines of progress. Progress toward treatment options and a cure. Please feel free to keep up with Ella’s life through our blog, “Ella’s Corner” and please feel free to share it, and her story, as you see fit.
