Our Journey thru JDM and Life!: CureJM Conference and the Chicago Rock & Roll Mini Marathon :)

Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips

MRI of his spine

X-ray of his chest

CAT Scan of his brain

CAT Scan of his chest

MRI of his chest

MRI of his hips

Numerous Blood Work

Spinal Tap

and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010

-Juvenile Dermatomyositis (JDM)-

Monday, April 29, 2013

CureJM Conference and the Chicago Rock & Roll Mini Marathon :)

Connor, Alexander, Ron and I are very excited to finally be able to make an appearance at the CureJM Conference!

For the last two years we made the attempt, even booking the Hotel and renting cars only to have life throw us horrid curve balls as in my brother in-law's death due to Cancer the first year and then not being able to get on a plane last year. Having to pull out and cancel at the last minute was sad to us both times but as it was out of our control there was not much we could do.

This year we are super positive it will happen as three times is a Charm and it is in the summer when the boys are out of school so if we can't get on a plane and the flights look red we have the option to drive.

It also marks the 10 year anniversary for CureJM and along with booking our room at the Conference Hotel we also signed up all four of us for the Mini Marathon.

This will be Connor's first race (walk - depending how he is feeling) since he was diagnosed three years ago. We are prepping for it at home with him participating for the first time at the School Running Club and also possibly attempting a 5K this June to see how he can handle it.

I admit my biggest concern is his mind set. He wants to do it and begged us, too, but then gets very frustrated when he comes in last. He knows in his heart that the success comes in finishing and not in what time frame. It is interesting how our mind set wants to will things to happen even if our bodies are unable to accommodate at times.

We set up a First Giving Page and we hope you can Sponsor Connor in this attempt and give him words of encouragements. He will be so proud doing this race and then to be able to hand a check to CureJM. The final race for all our JM/JDM/JA is of course to help find a Cure.

http://www.firstgiving.com/fundraiser/racasmith/chicagorockandrollminimarathon

Hugs,

R A C A