Notes from a Rare Disease Mom

We met our new neighbors a couple of weeks ago.   They stopped by to introduce themselves, bringing oranges and fresh avocados from their son’s tree.   We cover the basics in our introduction.   I’m a teacher and my husband is an electrical engineer.   We have a daughter, Thea, and Delilah, our dog, is already licking them and begging for attention.   I like them immediately and can tell that they will be good neighbors.   We mention that we will be out of town the next week, flying to Houston.   It seems like a good idea to let our neighbors know.   They ask what we are planning on doing during our trip there.   Tyson and I pause for a beat.   We are going to a medical conference, I say.   I see the question in their eyes.   Hadn’t I just said that we were a teacher and an engineer?   Why would we go to a medical conference?   However, they politely don’t ask any more questions.   I feel a smal...

June was the first ever Tango2 conference.   Tyson and I were eagerly anticipating this momentous event.   We would actually get to meet many of the families that we’ve talked to in our support group.   The board members and planning committee had been meeting for months, going through the organization of the conference.   It seemed like a miracle that the conference was actually here.   At the same time, I was feeling an anxious tremor in the pit of my stomach. I’d been to other conferences before, and I knew how hard and exhausting it could be to talk about a disease for days on end, especially when it affected you in such a personal way.   Meeting the families would be a blessing, but it would make everything about Tango2 real.   When I got there, I don’t know when I cried more- hugging the moms that I’ve talked to and leaned on for support for the past couple of years, seeing the “Faces of Tango2” video honoring our children and...

Last week, my husband and I attended the first ever Tango2 conference in Houston.  It was the most amazing, memorable experience!  I will share more about attending the conference in my next post.  In this post, I'm including all of the notes that I took.  This is what I understood when I went to the conference.  It is all from my perspective (and my husband added a few details) so I could have misunderstood or missed something.  The power points from the conference will be shared soon and they will have more details and be directly from the doctors.  This isn't intended as medical advice.  I'm just a parent.  I'm posting because it helped me to write it all out and I hope it will help you too! 1.        Many of the Tango2 kids have seizures and issues with their thyroid.   Parents should have the thyroid checked regularly.   If your child does not have seizures, watch carefully for s...