Shawni's daughter LucySince I am the mother of three very special little boys who are battling their own rare disease, I felt an instant bond with Shawni in a way I never had before, and I wanted to do what I could to help. So I asked her if I could spread the word on my blog. And, of course, she was happy to let me do just that. She sent me her story, which I'd like to share with you.
Shawni's beautiful familyIn Shawni's words...
Last year my two-year-old daughter Lucy was diagnosed with a rare syndrome called Bardet-Biedl which, among other things, causes kidney and heart problems, obesity, and most heartbreaking for us, blindness.
Even though in our hearts we knew full-well the diagnosis was coming (we had done enough research to know this syndrome fit…like a glove), in the back of our minds I think we dearly hoped that maybe, just maybe, it would all turn out to be a bad dream. And we’d wake up and our life would go on as planned.
But it wasn’t a dream. It was real.
And in many regards it slapped us in the face. Hard.
It is interesting to think about what has happened in a year. Our little family has learned and grown in ways we never thought possible. We have fallen more deeply in love with each other, we have cried together, laughed until we cried again, and worried. Countless doctors have been visited (and small pieces of my mind have been handed out liberally as needed). We have gone from worrying endlessly about blindness to obesity to heart problems to kidney issues and back again…around and around in one big circle.
As we work to fight all fronts of this syndrome, one thing we feel we can do is fight against blindness. You see, scientific evidence has given us so much hope that there may be a cure for Lucy's type of blindness within the next few years and we kind of feel as if we're on a race against time to help fund the research.
Simultaneously, as we found out about this syndrome my mother and I had just published a book on Motherhood called A Mother's Book of Secrets. My daughter, Lucy happened to be pictured on the cover. In light of our new syndrome news we decided to donate all of our royalties from this book to help fight blindness.
The money we can raise through this may only be a drop in the bucket to help, but sometimes as mothers we just need to do the best to fight for whatever our kids' needs may be. Right now, this is my fight, and I'm into it hook, line and sinker!
Shawni and her mother LindaShawni's mother and co-author of her book is Linda Eyre. Some of you may have heard of Linda and her husband Richard. They are the founders of ValuesParenting.com and parenting experts known around the world. This book is nothing short of wonderful. And Shawni has generously offered to give a copy of her lovely book to one lucky reader of The Shabby Nest.
To enter this giveaway, please leave a comment on this post before Thursday, March 11 at 11:59 MST. And because this cause is such an important one, I'd love to get the word out in any way possible, so one extra entry will be given for tweeting, facebooking or blogging about this giveaway...just please leave an extra comment for each thing that you do. I will announce the winner on Friday.
Again, all the proceeds from the sale of this book go to help fight blindness, so if you'd like to purchase your own copy you can do so here.
All photos via Shawni's blog
EDITED TO ADD: My sweet cousin Jillinda left me a comment letting me know that little Lucy and my cousin Bryce suffer from the same form of progressive blindness (Retinitis Pigmentosa). I knew, of course, of my cousin's disease, but I hadn't realized that both suffered from the same progressive blindness diagnosis until she pointed it out to me. So now I have a double interest in finding a cure for this disease!!
Thanks Jillinda.
Have a great day~
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