World TSC Conference 2014

So as most of you all know, we just got back from The World TSC Conference, in Washington DC. Back when the conference was first announced I knew I had to be there. What I didn’t know is how we could ever afford it. With me staying home with Maddie and Chris working at the fire department, I just didn’t think it would be a reality. Well that all changed when I shared the conference info on my Facebook saying how awesome it would be to go. Minutes after sharing it, I had a friend offer to do a fundraiser for us. I was shocked at her generous offer! She said she would get all the info and we could pass it around to our surrounding communities and see what we could raise. Once I added up the airfare, hotel, and conference fees, I realized that raising $2000 probably wouldn’t happen, but maybe we could find a way to come up with whatever wasn’t brought in by the fundraiser. So in January the fundraiser began, and guess how much our community raised?  You guessed it… A little over $2,000! We had some people donate straight to our trip and others who bought things through the fundraiser.  We were in awe of the generosity of those around us. We were thrilled and couldn’t wait to make the big trip! In February I booked our flight and hotel and waited to see if we would get awarded a scholarship from the Alliance. Well, once again our prayers were heard and we found out in March that we had a scholarship for one of our conference fees ($295). After that, all we had to do was patiently wait for July to come around….

So on July 2^nd we boarded our plane in route to Washington DC. I was so excited! I couldn’t wait to meet the moms that I had been in connection with since Maddie’s diagnosis. I was nervous and excited to attend the sessions, not really knowing what I was going to learn. Would I understand the topics, would the sessions be helpful? I was full of good anxiety. (Not really sure if there is such a thing..?!) Lastly, I was VERY excited to meet the TS Alliance staff. These people meant the world to my family, even though I had never met them.

To be honest, I didn’t know what to expect from all of the other attendees. My first thought was that it might be a somber setting. I mean all of these families, including ourselves; have dealt with the heartache that comes with this complex disease.  Would we all be depressed that our lives had brought us to this place in life? A place where an awful disease takes over the organs of our child, spouse, parents and so on… Would there be sad tears, would there be a hopelessness flooding the rooms of these sessions? I honestly didn’t know what to be ready for.

As we walked into our first session on Thursday evening, I quickly realized that this group of people was anything but, hopeless. We were a group that was eager to learn, a group that was willing to lend a shoulder to cry on, we were a group that would give everything but up. We were all fighting for our family members. We were there to arm ourselves with all the knowledge and connections that would help empower us to better care for our loved ones. These rooms were filled with smiles and eagerness to learn. These rooms were filled with strength and determination.  Although most of us had never met, it felt like we were attending a large family reunion.

Not only were my fellow TSC family members amazing, the medical attendees were wonderful as well. The medical professionals were in this fight with us. They all had a passion for TSC that was very obvious by the way they spoke about new research and technology. I had one lovely doctor hug me on a day that I had become overwhelmed with emotions. She gently pulled me in and embraced me.She reassured me that everything was going to be ok, and that there were people like her, fighting to give my daughter a better future.

It was so overwhelming to be able to be in a place full of people who understood. I didn't have to try and explain my fears because they knew those same fears all too well. I didn't have to hide my emotions because most of them felt the same way we did.

After being in the conference all weekend, I couldn't put into words how thankful I was for the Alliance and staff members. They cared about all of us enough to spend countless hours to make sure we were surrounded by the best doctors and speakers. The made sure the hotel accommodations were fabulous. They made sure every tiny detail was perfect so that our weekend was a fun, productive and comfortable one.

I feel so incredibly blessed that our community did so much to get us to the conference. We learned  an incredible amount of very valuable information.  We now have Maddie into one of the best clinics and I can promise you, had we not gone to the conference we would have never known to move Maddie to a clinic that has research going on specific to Maddie’s genetics. She will now be getting some of the best care around.

We can’t thank the Alliance and other families enough for an incredible weekend. It is a weekend that I will never forget! I am already excited for the next conference, whenever that may be. Until then, we will keep running the race that has been set before us.

Love always,

Heather