Last week I found out that my friends Dan and Erica received news that their five month old daughter Ella Lanay is suffering from a disease called Spinal Muscular Atrophy (SMA) Unfortunately Ella's disease is terminal. As shocking and devastating as this is for the family, Dan and Erica are sharing Ella's story to raise awareness of SMA and asking for prayers and support from friends and family.
I met Erica when I was a sophomore in high-school. I was shy and awkward and she was loud and beautiful. Most of our story's involve road trip debacles, board game nights, 6am kickboxing class (we were crazy) .....New Years party's and of course the time I hit on her husband....well they weren't technically married yet and she loved me enough not to break my arms...and I did get to be in the wedding...so all was forgiven (lol).
Over the years we have kept in touch periodically and during that time I've seen her face too many deaths and heartbreak mingled with much joy and success. And through it all she has always been strong.
Erica and I the night before her big day....
My heart breaks for Erica, Dan and their family. But even with the grief I know is happening, the Hunts have decided to live life with Ella and share in the happiness each day with her brings.
The wisdom and daily postings on Ella's Facebook page, have inspired me to stop complaining about my house, my car, my job and focus on whats important in life....my family, my children and my friends.
Im sharing this with you all today because I want to be a part of sharing Ella's story and offering everyone that reads TBR's a chance to help, by sending your prayers or positive thoughts, or by spreading awareness of SMA. And the most precious, to have a memory of Ella forever.
Ella's Legacy Bags
DH Dream Designs is developing a collection of bags called Ella's Legacy! In an effort to raise funds for Ella and her family a line of bags using Ella's little dresses are being created. These little dresses will be used on the front of the bags to create an outside pocket. A picture of Ella in her dress will be included on the inside pocket of each Ella Legacy Bag.
What a treasure this will be....
You can learn more, see the what the bags will look like, or get the information to order your bag at the following link: http://ellaslegacycollection.blogspot.com/
Follow Ella's story at Ella Lanay Hunt
Oh my gosh, what a heartbreaking news to receive! My thoughts and prayers are with the family.
ReplyDelete(((((((((( hugs )))))))))))))
ReplyDeleteIt is tough on family, friends, and loved ones. I am sending my prayers and warm thoughts. How brave for them to share their story.
so sad - they will be in my thoughts and prayers!
ReplyDeleteMy prayers and thoughts go with this family and you.
ReplyDeleteTina, I'm so very sorry. Ella is absolutely precious. Thank you for sharing the info on SMA. I have to admit, I didn't know about it before.
ReplyDelete*Texas sized hugs*
Isn't she just gorgeous! That little face is too precious, my thoughts go out to you and of course Ella and her family. Thanks for the info on the bags and the link Tina:)
ReplyDeleteOh my word. How incredibly sad. God bless this family.
ReplyDeleteI will be looking into these links.
*hugs*
ReplyDeleteI'm so sorry to hear about this. I never know exactly what to say, so forgive me on that point. Thank you for the information on SMA, it wasn't something I'd heard about before and as a mother, I can only imagine the pain and heartache they are going through. Thank you for telling me about the links and baggies. My heart and prayers are with them and little Ella. She is such a beautiful little thing.
I'm so sorry. My prayers are with the family. And thank you for all the info to check out. Ella is absolutely beautiful!
ReplyDeleteThis post brought tears to my eyes. What a heartbreaking story, and a beautiful gesture by little Ella's parents. My heart goes out to them, and I will certainly help you spread the word!
ReplyDeleteThis is so heartbreaking. My thoughts and prayers will be with Ella and her family. God bless all of them ♥
ReplyDeleteI'm so sorry for your friends. It's terrible to see your child hurt much less go through what they are going through. My thoughts are with them.
ReplyDeleteHeather