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.

Monday, November 30, 2009

The I LOVE LUCY Project

When Shawni delivered her fifth child three years ago, a new and very different chapter opened in her family. Little Lucy was born with a sixth toe on one of her chubby little feet, and additional research led to the diagnosis of a very rare genetic syndrome called Bardet-Biedl which, unless remedies and treatments are found, is almost certain to cause blindness, obesity, and other issues for this sweet little girl.

Because of Lucy, we have realized what an incredibly amazing, intricate, astounding creation our bodies are! As we spoke to the world’s most knowledgeable Doctor on this Syndrome, Dr. Philip Beales at the University College Hospital in London, we discovered the amazing fact that on the 9th day of conception, the little hair-like strands attached to Lucy’s cells (and all our cells) called cilia, uniformly started waving like octopus tentacles to the left (rather than to the right) which placed all of her internal organs perfectly on the opposite side of where they normally would be.

There were other incredible manifestations of this rare genetic disease which required a mutant gene on both sides of the family…so rare that we would have to go back many generations on each family line to find it! But there it was…that rare genetic combination…telling Lucy’s body to make an extra toe, telling her optic nerves that they would degenerate and create something called retinitis pigmentosa which would render these gorgeous blue eyes legally blind sometime between the ages of 9 and 15. Not only that, her genes have registered an order to slow down her metabolism and to turn most of her “fuel” into fat.

As devastating as Lucy’s diagnosis is, we are greatly encouraged by ongoing research for Lucy’s issues. The Foundation Fighting Blindness has had a recent breakthrough in their research and through innovative gene therapy has been able to partially restore sight to a nine-year-old and has given some sight to those born virtually blind. However, they are in desperate need of funding.

Therefore, we (Lucy's Mom and Grandmother) are launching the I Love Lucy Project to raise money for this and other foundations working directly on Lucy’s issues. This year we wrote a book together for Mothers which was published just as Lucy was diagnosed. It is called A Mother’s Book of Secrets and features lovable Lucy on the cover. As part of the I Love Lucy Project, we are donating all royalties for the book to research for Lucy’s issues. Hopefully this will provide a win/win way to help mothers and help Lucy at the same time. We are both miserable with promotion but we have the “Mother Lion” genes and are shamelessly asking for help!

Many have already contributed to Lucy’s cause by buying books, for which we are forever grateful. However, if you are looking for a lasting Christmas gift for your mother, sister, daughter (or daughters) or friends, or if you need an idea for a for a great stimulating Book Club book in the coming year, purchasing this book will be so appreciated and make you part of the I LOVE LUCY PROJECT!

In the book readers will enjoy Shawni’s spectacular family photography as they learn how to make motherhood more meaningful, manageable and even magnificent, with 40 little secrets from a seasoned mother of nine grown children and a mother in the thick of things with five young kids. Mothers will find “light in the trenches” as they learn the importance of taking care of themselves, finding balance and getting rid of the guilt. Moms of all ages will be tutored in how to give their family a sense of purpose through creating a short Family Mission Statement and how to generate great memories through traditions. They’ll find myriads of helpful ideas that include how to establish family laws, the secrets of getting kids to work hard and deal with money as well as the joy of service. There are also methods for teaching kids to work out their arguments without parental intervention, how to have fun with the BIG TALK about sex at age eight, and how to help children make good choices in advance.

Our publisher has joined our cause and is offering a 20% discount for online orders. You can order immediately by clicking here. (It is also available at Barnes & Noble and Amazon.)

Or you can simply learn more and donate to the Foundation Fighting Blindness by clicking here. All donations (tax deductible) received in Lucy's name will be donated to retinitis pigmentosa research, and will be matched 100% by the Eyrealm foundation (which will double your donation). Donations made by December 31st will be matched then AGAIN by chairman and co-founder of FFB, Gordon & Lulie Gund (for more details click here to watch their video clip).

Checks can be sent to:

Foundation Fighting Blindness
c/o I Love Lucy Project
11900 West Olympic Blvd #560
Los Angeles, CA 90064

On the memo portion of the check please write “I Love Lucy Project.”

The tax id # for Foundation for Fighting Blindness is 23-7135845.

We are ever more grateful for this adorable little individual who is such a joy to her parents, siblings, grandparents and to her enormous gaggle of cousins. Life just wouldn’t be as rich…or as difficult (which is what we need to grow) without Lucy. She accelerates the things we need to learn on this earth…love, compassion, getting out of our comfort zone, patience, empathy and problem-solving techniques. we all join in faith and hope that this little girl can be helped in her life journey through research!

5 comments:

  1. This is so great. I'm going to post this on my blog. I just love this little girl. I'm glad you're doing this.

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  2. If you can believe it I successfully added this to my blog! Love you Lucy!!

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  3. Hey Shawni, I have commented here before... I was really inspired by your blog and your Lucy project, and so I bought 4 of your books. One for all three of my sister in laws, and one for myself of course! Thanks for being so great! You are inspiring to all of us. Best of luck with everything with Lucy.

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  4. Your foundation is a wonderful tribute to the love you have for your daughter. What a great thing to be a part of something bigger than yourself (Dare to Dream reader). Best of luck in your efforts to raise money. You have become a part of my blog. I feel privileged to promote such a worthy cause. www.schenewarks.blogspot.com

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  5. From one mother to another I will send up a prayer for you and little Lucy. I'll also ask my 3 boys to send one up, as I believe children have a little louder voice to God (as they should, eh?) I stumbled onto your blog quite by accident strolling for home design blogs. But have been very touched by it. I noticed in many of your posts you mention your husband traveling and how very close you are and I thought of a quote I heard on a card many years ago:
    "If that I could I would shrink the surface of the Earth so that suddenly I might find you standing by my side."
    Much luck and good wishes with your cause. As I always say to my sons,
    Never, never, never give up. :)

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