My New "SMA" Angel

Posted by Amy Johnson Butler June 25, 2008 5:22 PM

It all started in the springtime. I was feeling a weird void in my life that I couldn't grasp a hold of. Why would I have this feeling? I have a beautiful and healthy family, a wonderful home, close friends, a gracious church and plenty of time to do all the things in life I have always wanted. Still...I was missing something and I couldn't figure it out. I would pray and I would cry out of pure confusion and loss.

Chloe hangin' poolside...such a cool cat!

And then it hit me. A new friend I had met, coincidentally, through my first article I wrote for the "Enjoy!" section in the Huntsville Times, had started a new charity called Circle of Hope. Sadly, she and her family had gone through the most horrific thing anyone can experience...losing a child. I was drawn to her and I didn't know why, but I am now convinced it was an act of fate that brought us together so I could fill my void and meet the newest love in my life...Princess Chloe!

Little Chloe is a vibrant and beautiful toddler who was born with Spinal Muscular Atrophy (SMA). I had never heard of this disease, nor met anyone with it. When I was given the opportunity to meet her and read to her (she loves books), I was astonished at how this little girl would change my way of thinking for the rest of my life.

According to, "Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing." I didn't know what to expect when I would walk into Chloe's home and I had to tell myself not to cry. For those of you that know me well, I cry at the drop of a hat. I have very thin skin and I feel empathy for everything.

For some strange reason when I met Chloe for the first time, I felt no sorrow; strange, right? Of course I knew that this family had more trials and tribulations than a lot of us could even comprehend, but they were so vibrant and happy. She was so beautiful with her perfect little pig tails and bows, and yet cautious when I came through the door. Her mother informed me that she was apprehensive of strangers due to so many coming through and poking and prodding at her for therapy reasons and it can be painful sometimes. (That almost made me lose it, but I held it together).

After our brief introduction, I had to begin reading her books pretty quickly because Chloe was getting "bothered" by her mom and me talking too much and not reading to her. This little girl cannot speak the way the rest of us do, but

Look at those baby blues!

she talks alright! Her eyes go straight through your soul and her cute little noises are different for each thing she is referencing. When she is annoyed, she lets you know. When she is happy, she lets you know. When she is sad, she lets you know. She is truly amazing. She has more personality than most kids I've met and I taught preschool for over five years and have three kids of my own. She is one of kind and has stolen my heart forever!

I would like to find more people in the area that have or are going through raising a SMA Child. I want to learn how to start fundraisers and let Circle of Hope help these families with any of their needs, from minor to extreme. I want to help find a cure for these babies. I want to help improve their way of life. I want to know that other people who felt a void in their lives can have it filled with these magnificent children of God. At first glimpse, you think how sad, but after you get to know these amazing families and children, you realize how special they are and how much they can help others too. I am eternally grateful first and foremost to Chloe Bush, my new friend and also to her mother and father, Joe and Jenny, for sharing your baby girl with me. I want to thank her amazing little sister Abby, who seems to have the most optimistic attitude and such a fun spirit about her and to Kim and Eli Houser from Circle of Hope for entrusting me to be the person to be blessed with one of the greatest treasures I've ever been given in life.

There is still so much to be done for this cause; we haven't even scratched the surface. Please read more information about this disease and how you can help from the websites below. Circle of Hope charity is in the process of getting their website up and going, but you can learn more about them at The Madison County Volunteer Center. I have also enclosed Chloe's special page from Caring Bridge which keeps you up to date on her progress. They love positive outlooks and prayers so please keep them with you; together we can make a difference!

A True Princess!

Fundraiser Information
Alabama Chapter
Birmingham, AL

*Please watch this video to learn more*