Lucy has a syndrome called Bardet-Biedl (BBS) which causes blindness, obesity and other health issues. Lucy is one of thousands of children who's families are fighting to find cures for this debilitating syndrome. The goal of the "I Love Lucy Project" is to work with doctors and scientists to stop the effects of BBS before it's too late.

Tuesday, March 27, 2012

Aside from my children (who ignore me anyway) I do not like to ask people to do things.

Especially when it involves taking people away from a busy Saturday and even more especially when it has anything to do with raising money.

But as the Vision Walk approaches this weekend (Saturday March 31st @ Steele Indian School Park) I feel compelled raise a call to action. {if you do not know about Lucy's syndrome and looming vision loss click here.}

I don't know why it has hit me so hard this last week, but as I sat trying to nail down a strategy for how to get this going last week Claire came and tugged on my arm. "I want to give the vision walk my $60 I got for my birthday," she said solemnly with some tears building up in her eyes. So then of course tears welled up in my eyes too and I scooped her up in my lap and stroked her hair for five minutes. How sweet that girl is.

I told her she should keep her money and work with her sisters to raise a little extra cash for the walk.

So one of the things the girls did with their neglectful parents away so much over the weekend (here) was have a lemonade stand to raise money for the walk.I took that one on my way out the door, and Elle took these on her iPod:

They raised $14.

I know that's not a whole lot.

And honestly, I don't care. I just care that those girls opened their hearts to a need and worked for it.
Because that means they're learning about compassion. And if my children can grow up and leave my home with nothing but compassion I will feel happy as can be.

I know it's rough to give to organizations where you don't know where the money is going. You know there must be a lot of overhead and you worry if your money will really get to the "cause" you care about.

And I can't tell you that I know the ins and outs about how the Foundation Fighting Blindness minds their finances.

But I do know that it is one of our only hopes to help Lucy keep her vision. I get newsletters quarterly that are filled to the brim with all the clinical trials coming up. I scour them for little clues as to what may give us hope to keep Lucy's vision.

The latest newsletter outlined a clinical trial in the works called TUDCA. It is something a new friend (another mother with a BBS child) had told me about before, but to see it there in black and white with reference to how it may help those with Bardet-Biedl (BBS) made my heart thump with excitement (see article here). We mothers of BBS kids want our children to benefit from that drug if at all possible because not only is it giving the scientific world hope that it will help with retinitis pigmentosa (the retinal degeneration that Lucy has), but there is also hope that it will help prevent obesity. That's a big deal since it's the second most significant factor that we worry about with Lucy.

It makes me emotional even to think about the possibilities. I don't want to get my hopes up too high that there could be something on the horizon to make a difference in the life of my daughter. I worry about those hopes getting shattered if I raise them up too much. But this looks solid enough to inch them up.

Gradually.

This clinical trial is happening through the Foundation Fighting Blindness.

We want to fuel the fire to get that study going.

Just the thought compels me to push that much harder to help raise money for clinical trials like this through donating money to the Foundation Fighting Blindness.

Please click HERE and donate to the cause if you possibly can (that's our personal fund raising page). Even a small amount helps. I just want them to know we're serious. We will fight for these children. We will fight blindness with whatever strength we can muster.

Because vision is a rough thing to lose.

Aside from asking for donations (big or small), I'm hoping people can link this post to their blogs and/or Facebook, Twitter, etc. and write up what they can about the Vision Walk.

My sister did such a nice post HERE to help create awareness and is even giving away attendance to a Motherhood Retreat for those who enter. That's a really big deal...those retreats are amazing! And remember to enter Macy's give-away HERE as well!

Obviously you do not need to do a give-away, just helping create awareness and getting those donations rolling is the key.

Please join in our fight.

I thank you with all my heart.

Love, Shawni

6 comments:

  1. My son was just diagnosed with Bardet-Biedl Syndrome. I am glad to have found your blog. I feel a little better seeing we are not alone. I looks like you are a VERY busy woman, but I do hope that if you have a chance you might email me the contact information for the BBS organization you mentioned you are the secretary for, and maybe your contact doctor in Maryland. Thank you so much for any help.
    Abby Hendricks akhendricks@hotmail.com

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  2. Hi, I've been following your other blog, and love the great advice that I glean from your mothering adventures.

    You probably already have this information, but I just thought I would mention that if you are looking for a non-chemical sugar alternative, the herb stevia is becoming more mainstream, and can be found in most health/alternative food stores.

    Take care,

    Wilma

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  3. Love your blogs and what you are doing for the foundation. I have two boys that have congenital glaucoma. One is nearly blind in one eye. Both of their surgeries started at a day old. We make many trips to the eye doctor. They are learning braille because their is a possibility that they will lose their sight. Lucy is so lucky to have a family that is fighting for her.

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  4. I met you at TOFW a couple years ago, even have a picture with you :) I love your Mother's book of Secrets. You're an amazing Mom. I was thinking about you and Lucy today and remembered you mentioning this blog, so I decided to look it up. I was hoping for an update on Lucy. I hope she is doing well since this is an old post :)

    But I LOVE this post. Made me cry. What sweet and loving girls you have. What amazing sisters Lucy is blessed with. This trial has clearly brought your family closer together. Your Lucy is beautiful and I pray that a cure will come so your sweet girl can keep eyesight in those beautiful eyes.

    Becca

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  5. Hello,
    I have recently started reading your blog. I love it and I enjoy all you pictures. You have a beautiful family.
    The company I work for is Midwest Eye Consultants. We have around 20 some offices in Indiana and each year each office is given a goal to raise for the Foundation for Fighting Blindness. We have raised several thousand and went and walked in Fort Wayne,IN for the past 5 years I think. Reading about Lucy inspires me even more to raise the money.
    Amber

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  6. I would like to donate but the link to your project no longer works - is there a way to donate to the foundation (from the United Kingdom) in your family's name?

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