“More Than 1000 Attend Prom for Wisconsin Teen Choosing to Die”

I read this headline with curiosity, wondering what ‘the deal’ was, and it was only curiosity that drove me to read the story in the first place.

It was reported that 14 year old Jerika Bolen of Appleton, Wisconsin, had organized a prom for herself and her friends – “J’s Last Dance”. Morphing over social media, the event received overwhelming attention including that of her teen idols.
The story went on to explain the reason for her end of life decision and the ‘Last Dance’.

I caught my breath and read the rest of the story with tears in my eyes and a huge lump in my throat.

You see, Jerika was born with Spinal Muscular Atrophy, a disease which (short explanation) destroys nerve cells in the spine causing muscles to weaken and atrophy. There are several types and severity of SMA - she has Type 2. She has never walked, has limited and decreasing movement in her hands and is in constant severe pain.
Those close to her spoke of her wisdom and great attitude. It is my understanding that such SMA patients have a shorter life and that it ends painfully, as one by one all her life functions would continue to shut down.
With medical and family counsel, she has chosen her own time for the end of her journey here. She will be placed on hospice and discontinue her ventilator assistance near the end of August – Spinal Muscular Atrophy Awareness Month.

Many will read her story and say “Gee that’s too bad” and forget all about it. Many will have an opinion or judge the actions of Jerika and her family and then forget all about them. I hope most will look up the SMA Awareness website and be part of the solution to this or one of many other diseases that cause our children to suffer so
The reason for lump in my throat? You may recall in past issues of this newsletter (available on our website) I have spoken of my grand-niece, Jessica, who also has SMA, but type 3 – less aggressive than Jerika’s. I first wrote in August 2011 about (then 15 yr old) Jessica’s difficulties maintaining a 'normal’ life, how they are overcome, about her hopes to drive a car and in August 2014 about her plans to attend college to attain a Phd in Biomedical Sciences.
Having graduated high school with honors, Jessica is currently enrolled in the U.W. Neurobiology program. Perhaps she will one day lead a team of researchers to the cure for diseases such as SMA or Parkinsons.

Every life has a purpose – we do not always immediately know what it is, but I believe every life requires some kind of courage.
I hope we can take whatever lesson is to be learned from the Jessicas and the Jerikas in the world and have the courage to do what it is that we each are called to do.

Please visit www.curesma.org for more information and ways you can help. 

 - Faith Middleton -