For all you Eyrealmers...Shawni has just created a new blog for the I Love Lucy Project. If you could all put the link Ilovelucyproject.blogspot.com on your own blogs with a little explanation to your friends and family members, it would be terrific. Saren has approved matching funds from The Eyrealm Foundation for any donations that come to The Foundation Fighting Blindness. This is the first step and then we'll go from there. Anyone with ideas would be welcome. We're sending the information below to all our email lists today. If you could post something ASAP that would be great! This one if obviously from us but if you have your friends lick to Lucy's blog it will work for you. Take a look at Shawni's post this morning and you'll see how she did it.
We all sure love this little girl and I think we can really make a difference:
Three years ago, when our daughter Shawni delivered her fifth child, a new and very different chapter opened in her life and ours. 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.
A whole new world of gratitude has opened up for our family this year as the Thanksgiving season rolls by and the Christmas season comes on. 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. Most of us have cilia that wave to the right at nine days, but for some reason her genetically generated messages directed hers to start waving to the left…which means that her internal organs are all place 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 side of the family 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 so grateful for and 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 Shawni and her mom Linda are launching the I Love Lucy Project to raise money for this and other foundations working directly on Lucy’s issues. This year they 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 loveable Lucy on the cover. As part of the I Love Lucy Project, they 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. Shawni and Linda 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 Christmas gift that will last 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 9 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 8 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.
Or you can simply learn more and donate to the Foundation Fighting Blindness by clicking here. All donations will go directly to research for retinosis pigmentosa. Any funds received in Lucy's name will be matched 100% by The Eyrealm Foundation, a public charity and is tax deductible.
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!
During this joyous holiday season, we are especially grateful for our own genes and cilia that somehow worked as they should. Perhaps our greatest gratitude should go to those whose genetic organization has enabled them to serve in the one of the world’s greatest causes… Motherhood!