So the reason we went to England in the first place was so that we could attend the BBS conference in Northampton.
The minute we found out about Lucy’s syndrome my parents, bless their sweet little hearts, were on the internet looking up everything under the sun written in conjunction with this rare, ominous thing looming darkly in our future.
Their theory is that you kill worry with knowledge.
If you look up “Bardet-Biedl Syndrome” on the internet, you may be in for a little bit of depression. The articles are filled with horror stories and worst-case-scenarios.
But my parents knew to look deeper than that. They read the research. Things professors and doctors had written.
As it turned out, most of the medical papers they read had the name of one particular researcher attached: Professor Phillip Beales (see the references at the end of this link for an example…his name is plastered all over there).
Upon further research they discovered Professor Beales lives in London.
As luck would have it, they had a speech scheduled there coming up.
Being the kind of guy my Dad is, he had no problem calling up Mr. Beales and asking him to accompany them to lunch while they were in town.
Now, many professionals would brush this invitation off with the flick of their wrist. They are much too busy for a nosy American to make their way into their already over-scheduled life.
But Dr. Beales, being the kind man that he is, thought lunch was a great idea.
He took time out to talk to my parents in great length about everything he knew. They recorded their conversation. It felt so nice to have someone…an expert…that we “knew” in a world of having to explain every little part of the syndrome to every doctor we met.
Dr. Beales recommended that we come to the BBS conference in England. He told them it was a great way for BBS families to get together and have that camaraderie, but also to be proactive as the syndrome started doing it’s various work of destruction.
That was three years ago.
Ever since then we have wanted to attend that conference.
We went to the BBS Conference here in the states at Duke University a couple years ago (more about that back here), but wanted to make it to England as well. Knowledge is power. And the more power we can have against this syndrome the better.
Last year we came so close but couldn’t quite pull it off.
So this was the year. Dave couldn’t make it (he was still in China, and isn’t quite ready for this type of thing), so my darling mother and I made it happen.
These conferences are so interesting. Parents come with their BBS kids and there is such a wide spectrum of how kids are affected. The first night I was in tears at dinner. It is emotionally draining to see children with the same syndrome your daughter has…to see it from an outside perspective.
I saw some of those kids how others may see Lucy.
And some of them made me ache for Lucy and her future.
But I came away from that conference invigorated with ideas, armed with information and surrounded by new friends that I know will help us on our way through this journey of ours.
There were over 300 people in attendance. We all sat together soaking in all the new information.
Here’s the main lady who put the conference together:
She was a gem, especially since she couldn’t talk (something happened in a surgery with her voice box…hoping they can fix it at some point).
Here is one of the sweetest, strongest girls I’ve met:
She has BBS and has overcome so many amazing obstacles doing research completely on her own. She is a nurse, can see just fine, and is fighting to get BBS more support in Australia (she came all the way from there). She was so inspiring.
This is our new friend Christian.
I had “met” his sweet wife and four kids through this blog before we got there. They have three boys and then a little girl who has BBS. We compared stories about how grateful we are to have older children who can help those youngest sisters so much.
I loved this family…I wish their sweet little girl was looking…
Here is one of the organizers of the conference:
…along with her cute son. So inspiring to see these kids doing so well.
This guy was one of my greatest inspirations of the weekend:
He is blind. He sat quietly in the discussion we had about all the research on restoring and maintaining vision. Near the end he piped up and told us he is who he is today because he lost his vision. And he wouldn’t change how he has grown from it for the world.
More amazing mothers with the children they take such great care of:
This little girl reminded me so much of Lucy.
An amazing couple who have two daughters with BBS.
Aren’t these parents just the best? You can tell by their kind faces that they were sent these children for a reason.
These two girls in the middle gave me a lot of hope for Lucy as well. Their eyes are still working quite well and they were just so sweet.
They even offered to take us to my sister’s house at the end of the conference, which we took them up on very happily. It was about an hour and a half drive where we got the chance to get to know them better and pick their brains about every question we could possibly come up with.
I’m so grateful for people like this who change our world.
I took a ton of notes that I will paste into the “I Love Lucy Project” blog, so check in there, and if you are interested in more details click on my mom’s blog HERE. She wrote down a lot of the important stuff we learned (oh I love having her to help me digest all that information) so I won’t duplicate it here.
We felt so blessed to be able to have that experience. We still have so much to learn, but I feel like we are making great strides.
I have spent the last year in complete denial about my son's ocular albinism. For me ignorance has been bliss, except the constant nagging in the back of my mind. I think it is time for me to face reality and realize that knowledge is power. Thanks for the little boost today.
That is so awesome that you have that kind of support. We just met our baby for the first time today and I am so thankful there were no complications. But it is so comforting to know that there are people like you who handle unexpected trials so beautifully.
thanks for sharing as always!
This is an article I found on msn.com when I was checking into my e-mail this morning. It just shows how wonderfully and quickly the scientific world is progressing. It gives hope! Although it doesn't specifically apply to Lucy, I did think of her when I read it.
I read your blog everyday. It is inspiring. I have RA and was having a poor picked on me day when I decided to read your blog for the day. I am a mother of 6 and can't play or teach my kids some physical things normal people can do. I try very hard to be tough and not show how bad I hurt inside. But when your daughter asks you to help her with her soccer and you can't do something as simple as showing her how to kick properly it can really take a toll on your emotions and your attitude. So I come here to read about your special family. You are a very special person with so much inspiration to us (strangers). I greatly appreciate all your time you put into your blog. Your family is beautiful. Thank you so much!
Can I ask where you got the blue and cream striped shirt? lol
My neighbor has two children, both with BBS. they found out their first had it when their second was only 4 months old. they went throught all of the tests and he also had it. Now they are 20 months and 4 years old. She is an amazing mom with them, my heart aches for all that they have to deal with. They have had to go through so many surgeries I can't count them. She told me this weeked about this conference you got to go to and how they would love to go someday. This past weekend she did a bake sale to raise money for the foundation trying to find a cure for childhood blindness. I got to help her and it was awesome! Thank you for being so open about your family, I'm going to tell her about your blog. :]