BBS (Bardet-Biedl Syndrome) is a genetic “rare disease” that affects approximately 1 in 250,000 people around the world.
It causes all kinds of things to go haywire in the body, including kidney failure, heart problems, obesity, polydactyly (extra digits), and retinal degeneration (blindness).
My brave, beautiful, stubborn, strong daughter is one of those 1 in 250,000.
She doesn’t deal with heart or kidney problems at this time, and we are grateful for a clinical trial drug that has helped immensely with the obesity factor (up to 48% of those affected with BBS develop diabetes and many more experience a myriad of other problems that drastically affect their quality of life due to weight).
But this girl of mine does deal with failing vision.
Failing more rapidly every day.
And it is a heartbreaking process.
As all fellow mama bears know, there is not much in the whole wide world you won’t do for your child who is suffering.
Although there is currently no cure for BBS, (believe me, we have searched high and low), that doesn’t mean that there is nothing that can be done to help people with BBS.
Because I believe in the power of awareness.
When you are AWARE of something, you are much more likely to UNDERSTAND it better. And then you are more likely to take ACTION.
So I want to make sure people are aware of BBS Global Day.
Yes, the actual “awareness day” was yesterday (and we have been walking our hearts out for it, I think we may be up past 200 miles of walking/biking), but…
It’s not too late to join the movement – you can pledge your miles and continue to walk or bike through the weekend.
You can join in the walking/biking efforts if you want this weekend (see HERE for more information on that, and HERE to register your walking…remember although the date is posted from yesterday, all weekend counts!)
You can support a walker HERE.
And remember that awareness is so much more than a day.
YOU can help accelerate research and care for everyone affected by Bardet-Biedl Syndrome.
You can DONATE (the clinical registry that takes so much effort to run, and has helped the BBS community more than I can say, is expensive to run, and the education, outreach and research to cure vision so incredibly important).
Your support helps to raise awareness of BBS, and accelerate research and care for everyone affected by Bardet Biedl Syndrome. (Check out the other countries who are participating in this “Global Day” over HERE.
(There are BBS family organizations in France, Italy, the Netherlands, the UK and North America, all trying to raise awareness this weekend.)
Because awareness = understanding = action = POWER.
And also, most importantly LOVE.
So if you want to brush up on your own awareness about BBS, click HERE.
In closing I have to say, and want to shout it from the rooftops, Thank you, thank you, dear Blog Readers, for all the support and love through the years for this girl:
Ever since she was this young when the blog started and we were trying to figure out all her delays:
(Before we even had an inkling as to what BBS was.)
Time and time again, you have lifted us through the darkest times, just from your love coming through the internet.
And we can’t thank you enough for that.
We have been overcome, over and over again, by the love that you have poured out for this girl.
Means the world to us.
Other posts about BBS:
Doctors & Experts
The Turkey Trot through the years
(how our family raises money for BBS research)
I hope you are having fun in France. No privilege here, no sir!
Sending lots of love for Brave, Strong Lucy from the Deep South!
Shawni, thank you so much for sharing. I really hope there will be a breakthrough on a cure or at least more treatment options soon. I will be praying for that to happen and praying for Lucy.
Such beautiful dedication to helping those who are in a difficult position. Thank you for sharing! Lots of love and prayers for more cures and answers heading Lucy’s way!
This girl is a champion! So grateful that you and Dave and so many other great parents have helped to create this important support team! It is doing so much good for those 250,000 kids who are working through this life with so many extra challenges. Go BBS Foundations!