Meet Ella. Ella is a beautiful 5month old with an amazing smile and beautiful hair. She has two older brothers and parents that love her immeasurably. Ella also has a genetic disease called Spinal Muscular Atrophy (SMA). SMA is a disease that affects 1 out of 6,000 babies born each year and 1 in 40 people carry this gene. As common as it is, I, like most people, have never heard of it. SMA varies in degrees of severity and unfortunately Ella has the most sever case which means it is fatal.
Although shocked and grief stricken, Ella’s parents decided that they were going to make the most of every moment they have with Ella. Their motto: Everyday Living Life Abunantly. As such, they treat every day as a special occasion, as a gift. They are experiencing every parent’s worst fear, and yet they retain a positive attitude as they try to make as many memories as they can with Ella through their “Dream List”, a list that hold many of life’s experiences that we take for granted.
Ella’s story has made an impact on people all over the world, including myself. Because Baby Girl is only 2 months older than Ella, this story has really touched my heart. I have taken for granted the moments I have spent with my baby…her “sleeping smiles’, her little gulps when she eats, the sound of her breathing at a 2am feeding. I am so very lucky to have her and to have been blessed with 5 healthy children, something that I have not, until recently, truly appreciated. Because of Ella and her family, I have a new and deeper gratitude for the moments I have with those I love and I most definitely do not take my blessings for granted.
Perhaps we can all learn from Ella and her family. How many times do we shoo the kids away so we can talk on the phone or only half listen to their story about gym class because we are sending a text? We focus so much of our time thinking about tomorrow that we miss out on today. People say “kids grow up too fast” or “time passes too quickly”. Do you ever wonder if maybe that is because we fixate on “what’s next”, whats happening tomorrow, the weekend, the vacation six months away? And in that future mind frame, we completely miss out on what is happening right now. We miss out on countless moments of just “being” with those we love because we have lost sight of what is truly important. We are missing out on life.
|Ella enjoying a Mickey ice cream bar
during her “Dream List” trip to WDW
So in the midst of this tragic situation, Ella’s parents have become teachers, instructing us to live in the “now”, focus on the little things, and embrace those we love.
You can read more about Ella’s story through her Facebook page. Her mom, Erica, posts about Ella and their journey through all of this. On this page, you will also be able to see Ella’s “Dream List”.You can find it HERE
You can also learn more about SMA or make a donation in the family’s name through FAMILIES OF SMA
|Swirly Sensations’ scarves designed for Ella
The “Ella” is a purple on pink. The “Erica” is red on black.
There are several ways you can help Ella and her family. First and for most, Ella’s family is asking for prayers. You can also purchase items that have been designed specifically for Ella. Swirly Sensations is selling hand dyed scarves that were designed with the help of Erica. Each scarf is hand dyed and is $25, with all of the proceeds going to the Hunt family to assist them with growing expenses and to support the “Dream List”. You can purchase a scarf through their Etsy shop HERE.
The Passionate Fashionista has designed handbags that are made from Ella’s dresses. You can find those here
The following video was created by my friend, @DIZKRAZKATE. It is a slide show made from photos taken on the Hunt Family’s “Dream List” trip to Walt Disney World a few weeks ago. This video was shown at the “Celebration of Life Party” that took place on Jan 15, 2012. Over 200 people attended the party to celebrate the life of this beautiful baby. I hope Ella’s story will inspire you to live in the moment, put down the iPad, hold your kids close and appreciate your loved ones like you have never before. It most certainly has inspired me. (grab the kleenex)