The sun shined through the tinted windows of my hotel room as I lay half awake mentally preparing myself for the day ahead. You see, this day wasn’t any other day – it was the first day of the United Mitochondrial Disease Foundation’s National Symposium.
The Symposium is a time in which Doctors, Researchers, Nurses, Parents, Patients, exhibitors converge for a whirlwind of sharing, learning, listening, giving and receiving. I’ve been to numerous other conferences before, and all of them were excellent, but there’s just something about the UMDF Symposium that is extra special. I don’t know if it’s because all the physicians and researchers mix and mingle with the patients the entire conference, if it’s because families get to connect with other families who ‘get it,’ or if, because there is such urgency in finding a cure for this merciless disease – everything is magnified…or maybe it’s a combination of all of the above – but it is hard to describe the bittersweet air that permeates every pore in our bodies.
While we all feel incredible HOPE from the amazing researchers and doctors who work tirelessly for a cure – deep down inside, we all share the same burden – The Unknown.
For Ralph and I, this conference had a whole new meaning as we now have 8 total in our family affected by this disease. We were there to learn, ask questions, and return home with as much information possible to not only help me and the children, but the rest of the family.
It was an incredible experience for Ralph and I as we were able to talk at length with 7 of the top Mito doctors and Researchers in the world about our family and about the kids. Not only did we get some really incredible advice that we will be taking home and discussing with our medical team, BUT – a few of the doctors actually gave us their cards and said that they wanted to work with our family because we had such a unique and interesting family history (which is great, but as many of you know, you NEVER really want to be ‘unique’ and ‘interesting’). News of Sasha having continued seizures on EEG despite medication alteration came just before we left for the Symposium, and – honestly, I think it couldn’t have come at a better time because one of the doctors we met with for 45 minutes is not only one of the top Mito experts, but he’s also a well known expert in seizure disorders. Some of what he said was not ‘comforting’ – but we left our meeting with him feeling like we knew what we had to do and what we had to rule out. He also was able to see one of her ‘episodes’ that I had videotaped a month ago and said that she clearly was having a seizure and showed us what to look for. It was truly so wonderful to have the ear of one of the best (he’s out in Seattle, WA) to help us understand this new development. I could go on and on about ALL the amazing people we had a chance to speak with – but it might take forever!!!
The really neat thing was that I was asked to speak at Harvard again (and of course, I said YES!) as well as to work with a leading researcher (who is right in our own backyard here in MA) on some really promising things.
One of the greatest things about Symposium is that you get to connect (in person) with some really incredible people who are living with Mitochondrial Disease as a facet in their lives. Some of these people I have known for years, met a few times, or have only met online – but to see/meet them in person just is unexplainable. These people are the most inspirational, motivational, and courageous people you will likely ever meet. To be faced with a debilitating and unrelenting disease and to choose to be ‘Part of the Cure’ and FIGHT despite the odds that are against you….well, I just don’t think my words can give the amount of justice these people deserve for their fight, their dedication, their strength, and their HOPE.
The night started with the director of the National Institute of Health’s Undiagnosed Program giving a talk about what the program does, how it has evolved and ended with a presentation of case studies that offer HOPE to some of our families.
What is even more special about our community is that, even while they all have their own struggles, they rally around families who are struggling, fighting, in crisis, or in need and they give their all to them. They are truly a special group of people and I am blessed to know them all.
My ‘Mito Sister,’ Rachael Pipp received a leadership award for her dedication to the UMDF and fundraising for a cure and I couldn’t have been more proud. I cried tears of joy because I couldn’t think of a more deserving woman to receive this honor.
2 other Mito Warriors were honored as well for their efforts and their leadership – it was wonderful to see a teenager make such a difference…and touching to see a woman who had been involved with the UMDF for years also receive recognition for all she has done for our community.
Researchers were presented with grants and awards….
And one special presentation was presented on behalf of the Higgins Family and the Ainsley Paige Higgins’ Dare to Hope Foundation in honor of their sweet daughter, Ainsley, who went to Heaven a month ago after battling bravely with Mitochondrial Disease.
I met Brittany Wilkinson and her family in 2009 at a Mito Symposium and was just so touched by her spirit and her heart. My heart was sad to be at this symposium and have her not be physically present, but she was absolutely with us all in spirit. I vow to let Brittany live on in the things that we do. I can only hope that my children are as driven, compassionate, and amazing as she was.
The night wrapped up and Ralph and I headed to bed. My mind was swirling from all the information, discussions, emotional moments and chaos of the day. It didn’t take long for sleep to find me once my head hit the pillow…..
Day 2 of the Symposium started out with a whisper but grew to a loud roar as all the families converged again in the meeting areas ready for what promised to be another day of incredible meetings, lectures, and introductions.
Ralph and I headed to the first 2 sessions of the day and they were both very good! In between sessions we caught up with old friends, made new friends, and bumped into the Mito doc who first diagnosed me, Dr. Kendall. She is just the most amazing, compassionate and dedicated woman. I am so lucky to have had her on the first step of my journey. We shared a nice conversation about how neat Symposium was and then Ralph and I decided that, since the sessions were being recorded and I wasn’t feeling fantastic – that we’d start our almost 8 hour drive home. Being away from home, the kids, my family, Beast….and hearing some tough news as we spoke with several doctors about Sasha in particular – it just made me want to be as close to them as possible.
There are so many Mito families I know right now who could not be at Symposium because they are too ill or are fighting for their lives…and, for my family and for theirs – I will continue to fight and be a voice.
The UMDF did an amazing job with organizing the Day on the Hill AND the Symposium and it all came together like a giant jigsaw puzzle. I want to thank Chuck Mohan and his dedicated and hardworking staff for everything they do for our families. Symposium can be hard on us, but it also brings us a sense of peace and HOPE….and it burrows deep into our souls. For that, my gratitude is never ending.
As I sit here in the van writing this on our journey home, the reality of the unknown settles in hard and, no matter how hard I try to insulate myself, the reality is still there. SO, instead of letting that reality define my life – I am going to redefine the reality and only allow it to be a whisper in my heart instead of a pounding hammer that crushes all of who I am.
Well I promise you this – until my final breath, I will fight for ‘If only…’ to become a reality.
Love and Light,