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Ninja Nana

Grandparents' Blog

An Open Letter to Grandparents
from Pauline Lenz, New Leadership Council Member & Grandparent Rep

Hmmmmmmmm….
“Grandparent Rep” for Cure JM Foundation‚Ķ”

When I was asked to fill this position on the Leadership Council, I had about 30 seconds of self-doubt creep in. Seriously, I think being Ninja Nana surely qualifies me! Let me give you a little background about myself. My name is Pauline Lenz, and my almost 7-year-old Grandson Kinser has Juvenile Dermatomyositis (JDM). I am known also as Ninja Nana, because Ninjas never give up.  Helping Cure JM Foundation has become my crusade.

On August 6th, 2010, my entire life changed in a one-minute phone call from my daughter. I always heard your entire life could change in a second; little did I know how true that statement was. She had an appointment that day with a pediatric rheumatologist, after some blood work done by his pediatrician came back with some scary high levels in certain areas.

Kinser had a rash, which we all thought was eczema, even his pediatrician. He had it for so long, we were pretty used to the red face and all of his joints being covered with it. Sometime in the early part of 2010, we all started noticing he was tired more often than not, which was not like him at all. In the spring, he started having difficulty getting up from the floor without assistance, so my daughter made an appointment with his pediatrician. Tests were done and she was referred to the rheumatologist. Her phone call that afternoon was the worst minute of my life; he had a life-threatening disease and needed to be hospitalized immediately to start treatment.

Yes, I wanted to fall apart and stay there. That was not an option, as I needed to be strong for both Kinser and my daughter. So, our entire family began a journey with the both of them, and we have never looked back.

Being a grandparent means you step up and help when needed. You pull all of those skills that you learned as parents, and become another support system and an extended caregiver. You can be sad and cry, this disease is horrible to say the least, and the medications taken to help save their lives have side-effects that are as bad as, if not worse than, the disease itself. So, you step up and help.

If you are a grandparent, you may be asking yourself, how can YOU help? I actually did a little survey with some parents of JM children and here are a few things they want from the grandparents.

Myositis and You, The Book
  • Learn as much about Juvenile Myositis as you possibly can, so you can listen and understand what your grandchild is going through.Visit www.curejm.org
  • Get the book Myositis and You and read it twice. So much information in it, I consider it my best resource.
  • Find out what treatments and medications they are taking and do some research on them to find out the side effects and any long-term issues with them.
  • Provided guidance to families to help them navigate the health care system and work with insurance companies, doctors, schools...
  • This is a BIGGIE! Understand the seriousness of JM please. This is not a cold or the flu; it’s not going to go away, when we say “No Cure” we mean it. Your grandchild is going to have days where they seem to be “fine/normal/healthy.” Trust me, this disease has no rhyme or reason and can rear its ugly head in hours.

Those are just a few things parents have mentioned; we will talk about more as time goes on. I think what they are saying is simple: they need to know you understand how much JM has changed the entire dynamics of their family. Forever, until we find a cure. Which brings me to something I think would be very beneficial to all grandparents.

Every little bit helps, and our doctors work so hard to figure this darn disease out. Click here to donate online or to get information on mailing in a check or money order. You can also click here to schedule a monthly donation or click here to learn more about making a planned gift from a trust or estate.

In fact, I challenge every grandparent to donate! Whatever amount you can, and we will try and track those donations. Remember, you can collect from your friends and groups, and make a lump sum donation. Think about how that $25 donation just may be the money that finds the cure.

Love and hug your grandchildren. In fact, call their parents today and ask what you can do to help. Don’t take no for an answer, maybe just take them out to lunch or dinner, and find out how this disease is affecting them.

Till next time, love hugs and strength from Ninja Nana 
(AKA Pauline Lenz)

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