Kinser has Juvenile Dermatomyositis

The “I really HATE asking for donations” short novel

Author: Pauline Sedlock Plotner Lenz

Okay, seriously, I was always one of “those” people who thought to myself if I saw one more person begging for money for a disease for children, I was going to scream! Geesh, I had my own bills to pay, if you need money sell your freaking house or car! Stop going out to McDonald’s for lunch, or quit buying those $6 coffees at Starbucks!

Now, I was not TOTALLY heartless, so no hate mail needs to be sent please. I did drop off my extra change in those containers sitting on the counters at the corner carryout here. You know those, the ones with the little story about the child with ______ where they taped or glued a picture of little Susie to show you a face to the cause? Yepper, that was a way I could be “half-way there” to the cause.

I need to also say this in my defense, I always told people that it is totally disgusting that in a country like ours, where people pay thousands of dollars for front row tickets to the New York Yankees games (Is that a baseball or football team, I can never remember), that any family NEEDS to hold a “Spaghetti Dinner Fundraiser” to make enough money to pay for a hotel room in a strange city, while their child goes through Chemo/Surgery/Treatment that might, just MIGHT save their lives.

That didn’t really change me too much though, because it was out “THERE”, you know where “THAT” is, in another city. Away from me, and the lovely world I lived in. The place where I went to the Mall and looked away from any child in a wheelchair silently praying for them: but never stopping to give the parents the time of day. Nope, I needed to get to Bath and Beauty Works because they had a BOGO sale going on, and I love the Cucumber Melon Bubble Bath they carry! I felt sorry, sympathetic but not enough to stop.

Then a ‘ONE MINUTE (actually a 30 second tops) phone call from my daughter changed everything. August 6th, 2010 my life totally changed in less then one minute. One damn phone call, and I was ready to give my life back to God in return for Kinser’s. I remember that call word for word.. “Mama it’s BAD! REALLY BAD”.

– No, it’s not true.

– They made a mistake.

– Mixed up blood work.

– Doctors make mistakes all the time.

– Labs make mistakes all the time.

– Chart was mixed up.

NO, it’s not true.  NO, IT”S not true.  NO, IT’S NOT true.   NO, IT’S NOT TRUE.

Who was screaming? Someone was in my head and screaming words? My heart was racing so fast that I couldn’t catch my breath? I found myself sitting on the floor, holding the phone. I could hear the dial tone. My shirt was soaked in the front? My eyes burned, and my face was wet, (okay, that explains the wet shirt, it was from crying)? I looked at the clock and remember that when the phone rang, it was not the same time. Where did that hour go?

My life changed, it is not and never will be the same.

Kinser has Juvenile Dermatomyositis. (CureJM.Org)

Three years of chemo shots.

Three years of medications.

Three years of blood tests.

Three years of hating the letters JDM (easier to pronounce).

Three years is a long time. Others have been living this longer, some are just starting this journey. We have lost children, Mason is the one I remember the most because we were included on a personal level. One year, give or take a few months. It was a post on our Caregivers Page on Facebook; Mason lost his battle.  I cried along with hundreds of other people.

This is draining to say the least; it’s hard to put you out there and ask for help.

This is draining to say the least; it’s impossible NOT to put yourself out there and ask for help.

So, I have changed. Oh, I still believe that no family should have to raise money for that hotel room. But they do, and will until cures are found. But now, I stop for that child in the wheelchair at the Mall, I strike up a conversation with the parents and ask questions. So that they know that somebody cared “enough”.

We need money for research and unfortunately, this disease is so rare that we don’t get attention like childhood cancers. So, we beg and plead for money/hold fundraisers/sell things our children and grandchildren make. Not to pay the rent or utility bills in our fabulous offices we have, we use our kitchen tables in every state, Or the floor. Or; our cars (yes, my car is always packed and ready with balloons and literature to hand out).

We are unique in many ways, 95% of every dollar raised goes to finding a cure in some way, which leaves five cents of every dollar to pay for our expenses of brochures and information packets. We want a cure, so the understanding is to keep the costs down to pretty much zero, to use the money for research. Yes, we are unique. No pay is needed when it is your child/grandchild.

This disease is not going to go away unless we raise money for research. Plain and simple.

I have changed so much.

I will keep changing.

I will never be the person I was at the beginning of this chapter.

I have changed so much.

For information and to make a Donation please visit www.CureJM.org

Are you a caregiver of a child or adult with JM/JDM and on Facebook? Visit the following link for JM Moms (care givers) closed Facebook group:  https://www.facebook.com/groups/125974597456217/



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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