Sometimes I like to take a small break from all the fun reviews and giveaways to share something with all of you that is very important to me. Sometimes it’s just a simple little post about a special moment with my family but sometimes it’s something a little more, something bigger that I want to share with all of you and hope that you might help me spread the word.
Today I want to share with you a website about a wonderful little girl, a website that not only shares her story but also tells about a serious rare disorder many children deal with as well as a wonderful charity golf event to help raise money to find a cure.
Meet Lola, a beautiful, sweet little girl with an amazing spirit! Her mom is one of the wonderful military spouses I met while living on base. Lola was born with a rare disorder called Sturge-Weber Syndrome. Sturge-Weber Syndrome is a rare disorder that is present at birth. A child with this condition will have a port-wine stain birthmark (usually on the face) and neurologic problems. Little is known about the cause of
I want to invite all of you to take a moment to visit Lola’s Gift, a website dedicated to Lola and finding a cure for her rare disorder. Take a moment to watch Lola’s video and meet this sweet little girl.
Donations are welcome and those who donate are entered into a drawing to win an iPad3.
For those interested, you can register for the Charity Golf Tournament from Lola’s website.
Sponsorship Opportunities are available. Click HERE for more information about Sponsorship Opportunities and how to sign up.
Thank you for raising awareness about this – I had not heard of Sturge-Weber Syndrome before. I’m going to tweet this out to spread the word to my Twitter pals about this condition and cause.
I had not heard of Sturge-Weber Syndrome. I will be visiting to read more about this amazing little girl.
Thanks for raising awareness!
I have to say I’ve not heard of this disorder either but I was glad you made me aware of it and hope they find a cure.