Not the way we would choose to spend either of those days, but it turned out so much better than we expected. Dave has been really hesitant to go to these things because he figures if it doesn’t tell us how to fix BBS then why go. It can be pretty rough to go to these things because you can catch a glimpse of where your daughter may end up in the future and sometimes seeing all the other kids is tough.
We weren’t going to go since I had recently gone to the one in England (back here), but we have “met” so many amazingly conscientious BBS parents through the Internet we ultimately decided it would sure be a great opportunity if we could all meet there.
The more we parents dealing with BBS band together, the stronger we can be to seek out the best care for our kids. And the more researchers will take us seriously. I think if we work together we can be a really strong force for good.
It was so good to meet these neat families who are so conscientious and on-the-ball. I wish I had pictures of all of them, but here are a few.
See that sweet girl in the front? She was our inspiration a couple years ago when my mom and I went to the conference. She is doing so great and her parents are so on top of things.The lady in blue above is the one who told me about TUDCA (more about that in this post) in the first place. She has the sweetest little boy a little older than Lucy and I’m mad I don’t have a picture of him.
These parents below have taken such amazing care of their daughter (in the middle) who is now in her thirties. She has lost a ton of weight and has her own job at a consignment store.
Here are a bunch of my new friends.
It feels so good to know that I could email any one of them any time and feel understood and comforted, knowing that we are all working toward the same things, and all deal with so many of the same issues.
Sweetest little boy:
(Pretty sweet big guy too :)
On top of meeting so many wonderful people, we sat and learned so much as doctors and researchers went through all the things they specialize in.
I was really intrigued by the talk about speech in these kids. It all clicked to me because it was exactly how Lucy’s speech development has been.
The woman who put this one together has a daughter with BBS and she has done so much research.
Her daughter spoke as well. She is a college graduate with BBS and has some serious will-power and spunk.
She gave me so much hope for Lucy’s future.
But I will admit that seeing her mom and how on-the-ball she was to help her get to the point where she is made me tired.
We talked about kidney function:
…which actually made me super worried about Lucy’s kidneys. Kids with BBS often have a lot of kidney problems and a large percentage have to end up with kidney transplants. We found out that issues don’t generally manifest themselves before it’s too late in kids with BBS because they have a high tolerance for pain and don’t recognize the symptoms as easily.
Needless to say we came right home and got Lu into a renal ultrasound and even a VCUG. It was horrible, but it gave us a good peace of mind that things are still looking ok.
We talked a bunch about retinas and their impending degeneration.
…and discussed tons about cilia and “ciliopathies” (all kinds of problems that relate back to the cilia and how they function). In times like this I sure wish I had studied medicine in school. Wow, there is so much to take in for common folk like me.
We loved our “lab tour” and meeting many of the sweet research students from all over the world who dedicate all their time to studying BBS and all that goes with it.Here’s the main researcher:
This is their simplified depiction of cilia on cells and how some don’t have it and others are dysfunctional.
They do a lot of their work on zebra fish:
…as well as on mice:
Here are a couple of the wonderful presenters…both very specialized in eyesight. Their lectures were both fascinating and we are excited to stay in contact with them as we go through this journey.
This cute girl not only had her parents there, but both sets of grandparents. I loved getting to know them a little bit.
This boy was awesome:He’s sixteen and has very little vision. I asked him what he would recommend to help Lucy at this age and he immediately told us working with her on Braille would be the best thing we could do. Kind of a dagger in the heart, but so true.
Check out these awesome people:
Here’s another conscientious mom we are so glad we got to meet. She and her husband are both researchers and although their daughter is relatively newly diagnosed, they already have so much great information. Some day we will all have to bring our kids so they can get to know each other.
I think the best thing was that we saw so many people who were dealing so amazingly well with the obesity issue. They are serious about exercise and food intake and vitamins, etc.
The hardest thing was that almost all of the older kids really have lost their vision.
I think up til this point Dave and I have just kind of hoped that Lucy is on the good end of the vision spectrum and that maybe she will keep that poor vision of hers for as long as possible.
But we realized that’s not going to happen if we don’t take some serious steps to push research more and seek our own answers. Blindness in BBS kids is very real.
And that makes us really, really sad.
At the end of the conference we had “elections” for a new board. Dave and I have a dear friend who we “met” through the Internet when Lucy very first got diagnosed. He has a son about a year ahead of Lucy and has helped us SO much through the last couple years.
Here he is with his family we finally got to meet: He became the new president and will do such an amazing job.
For some crazy reason I was nominated as the new Vice President. I really tried to turn that thing down at first figuring someone else could do such a better job. But I’ll be so happy if I can help band people together to help generate more strength for the journey that lies ahead for all of us.
So happy we could come out of that thing with smiles. I had been so worried about Dave and how rough it would be for him but man alive we both came away so glad we went.
We couldn’t get a flight out the night after the board meeting so we hung around Duke the next morning which happened to be Father’s Day.I’m sure Dave was overjoyed to follow me around snapping away pictures with my iPhone but I couldn’t help it.
I love that campus.
We got home that evening to super excited kids to help celebrate Father’s Day and a babysitter we adore.
…Ready to take life and this BBS thing on and make things the best we possibly can.