Princess Ella has touched the hearts and minds of many not just near her home in Northwest Indiana, but around the globe, as family, friends, friends of friends, and even random people on Facebook from as far away as Europe and Africa pray for her and her family every day.
Just a few days before Christmas, Princess Ella's parents received the news that their beautiful daughter was a victim of a genetic disorder known as Spinal Muscular Atrophy, or SMA. Princess Ella inherited the most severe form of this disorder, and her beautiful smile and bright eyes will only be with us for a few more months. While many of us, myself included, have never heard of this disorder, it affects about 1 out of every 6,000 children. In fact, there is a 1 in 40 chance that you are carrying the gene for this disorder. You can visit Families of SMA for a wonderful resource to learn more about this disorder by going to their website www.fsma.org.
One of the things on that list included a trip to Walt Disney World with Princess Ella, and another was a "Celebrate Life" party in her honor, that was held this past weekend on January 15th. At this party I was honored to be able to present a slide show I put together (with a lot of of help from iMovie) to share Princess Ella's special trip with all of her friends. Please be sure to turn off this page's music by scrolling to the bottom of this page and pausing in the pink music box on the lower left, before viewing Ella's video, since it does have music of its own.
Many people have asked what they can do to help Princess Ella and her family. First, prayers for Ella's time left with us to be beautiful and full of life are most welcome. You can also offer up prayers for strength for Princess Ella's family as they go through this experience with her, and maybe even a miracle. If you'd like to support her family as they experience things on Princess Ella's Dream List, and as they are faced with increasing medical bills, there are a few ways you can help. You can donate to Families of SMA in Ella's name by going to their website.
|Sweet Princess Ella in a lovely polka dot number.|
|Now the dress is transformed!|
If you're not into handbags, you can still be fashionable and help Princess Ella by purchasing one of two chic scarves from Swirly Sensations.
The other option is "The Erica", which comes in Ella's mom's favorite colors red and black, and has a swirled dot pattern.
The scarves will sell for $25 with all of the profits going directly to Princess Ella's family for expenses.
To order a scarf, you may visit Swirly Sensations website on etsy.
RNawaymama is also promoting these on her blog Tiny Bits of Magic.
http://www.heartsofgoldwalk.org/ I think I even heard a rumor that some members of the Notre Dame Football Team will be participating. You can register as an individual, or be part of "Team Ella". Individuals who raise $50 or more are eligible for prizes, and all walkers get a chocolate "heart of gold" from The South Bend Chocolate Company. I regret I won't be able to attend personally, as my family will be visiting Mickey ourselves that weekend. I do want to encourage people to participate though. It's a great cause, and a fun event to get some exercise despite the cold weather in South Bend.
So, I hope you will join us in "Celebrating Ella" as her party hoped. Most of all her family wants to encourage everyone to remember to live each day to the fullest, hug your family, and have fun. Are you "Everyday Living Life Abundantly"? ELLA