Wednesday, June 22, 2011

Mitochondrial Disease Symposium

I still don't think I have processed all I learned at the United Mitochondrial Disease Foundation National Symposium, but I am at least going to share the things I have processed...and some fun stuff, too!

Last Friday morning I got up dark and early (after two days in Ann Arbor on Wednesday and Thursday) to head to Chicago where the symposium was held. This may explain why I have processed anything yet....I was exhausted! However, so happy to be there and so happy for what I learned. In a nutshell, I learned (again) that nothing about Mitochondrial Disease is an exact science. There was one doctor who got up to speak who, I promise you, I wanted to hug him and squeeze him and bring him home to be our live-in grandpa. He was the cutest thing! He said that he did his first muscle biopsy in 1972 and has woken up every single morning since then wanting to know more, to understand more, and to figure this thing out. I have to tell you, I LOVE that there are doctors out there with this kind of passion. He also said, "Those were good days and those were old days, but those were not the 'good old days'. These are the best days there have ever been for what is happening in the field of Mitochondrial Diseases." Wow! Very Cool.

One of the greatest things about the conference is that the most respected, knowledgeable doctors in the country are there. They speak publicly and they are accessible privately. I heard a talk on the misdiagnosis of Mitochondrial Disease, the latest developments in testing methods, advancements in therapy for Mito patients, and even went to a Music Therapy session for the teenagers. That was fun....I can definitely see where music therapy could be so beneficial for these kids. I have always said that if I went back to school to get my Master's Degree, it would be in Music Therapy. This definitely gave me an itch. One of my favorite things was called The Doctor is In" where you could sign up for a fifteen minute slot with any doctor of your choice. Clara's doctor, Dr. Kendall was there, and she is fabulous, but I knew we would be seeing her in a week anyway, so I decided to choose a different doctor and get a fresh perspective. He did have some interesting observations and some suggestions of additional testing we may want to consider, and that she would consider if Clara were her patient. I will mention those to Dr. K and ask her what she thinks. What a blessing, though, to have that much brilliance...the top mito doctors in the country....all in one place!

There were also a number of vendors there...from different laboratories, T-shirt vendors, medical supplies, to a booth who was selling a book about a very inspiring, godly young lady who died at the age of 16 of mito, but lived her life to the fullest and was able to see outside of herself in spite of it all. Her mother has published a book of all of her Care Pages entries that I can't wait to read. That's the kind of example I want for Clara if we ever get to that point.

As great as all of this was, I have to tell you, the best part were the PEOPLE. I know it surprises those of you who know me that I was energized and excited by the people I met. :-) Of course, with anything like this, you meet Moms who have lost children and have heart-breaking, inspiring stories, but there is also fun and laughter. Jeff said it sounded like "Mito Moms Gone Wild!". I met some precious women who I know I will remain in contact with and will look forward to seeing at future conferences. I met one family from New York. They had two, precious girls, ages 15 and 12, that sang "southern" for me. Hilarious! I recorded it but cannot figure out how to post it here. I met a few other Moms who live in Michigan. That was neat. Two of the ladies I met were like meeting Soul Sisters...truly. One I was SOOO excited to meet. She and I have corresponding for a long time via our blogs, and I had so much fun with her! I'm talking, laugh-till-your-gut-is-about-to-split fun! Her name is Clara-Leigh and she has three kiddos, two who are affected by Mito. She is high energy and super-fun and a go-getter. I could barely keep up with her. (Did I mention I was exhausted).

The other lady Clara-Leigh and I roomed with...I had never met her until I got to Chicago. Her name is Nina, she lives in Michigan and also has three children, one who is affected. She is super-sweet and I got extra time to get to know her. Originally she was going to ride Amtrek back to Grand Rapids and I was going to give her a ride to the train station. However, because of some miserable traffic, she missed her train. That meant we got to ride all the way back to Niles together...and talked the ENTIRE time! her husband picked her up at our house and they stayed and we all talked MORE! Super-sweet family. Unfortunately, I didn't get a picture of her.
Last, but DEFINITELY not least, I got to see and spend some time with (but not enough)...Mito-Mom (insert super-hero music here). There are no words that express what this lady has meant to me. God brought her into my life at just the right time to help me muddle through the mess of Mito when I needed it the most. She said I could reveal her true identity.....

Mary Beth, you are an angel.

This is Skittles, one of the super-sweet service dogs I met.

And finally, just for fun, this is a picture Jeff sent me while I was in you think they had fun with Daddy??

Of all the things I came away with, the main thing I came away so burdened about is the need to pray for these doctors. I have prayed for Clara and our family, I have prayed until I have cried for other Mito kids and their families, but I am ashamed to say, it has never occurred to me on a regular basis to pray for these doctors. They are the most under-paid in the field and have more passion than any other group of doctors (as a whole) that I have ever had the pleasure of being around. They love what they do, and they care about their patients. I can promise you, these doctors and researchers will be on my daily prayer list from now on.

Until next time...

Much Love!

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