Wednesday, January 14, 2015

"The World Loses a Voice of Compassion, Strength and Love"- Living with Spinal Muscular Atrophy Type 1


My heart is having a hard time dealing with the passing of a fifteen year old sweet child with Spinal Muscular Atrophy that flew to heaven Jan. 13, 2015.
 I actually Hate SMA and all the lives it steals. I deal with it the best I can and keep praying that it doesnt take my Lizzy too soon like it has so many other innocent little ones. We never know when our time is up. God only knows that but.... still does not change how our hearts feel when these loved ones are taked from us so quickly.
Brianna McDanel lost her life fighting the disease that haunts my life every day. She was a strong minded child with a huge compassionate heart. This girl had very strong opinions and beliefs.  She loved helping other children with other diseases by sharing their stories. She would share posts on facebook when a child she knew was sick asking for prayers, or a death in their families and always was thinking about others while being in so much pain from her poor little body. She had been hospitalized several times the past few years and I just think her body was so warn out and could not go on anymore.
We have known her family since Lizzy was 18 mths old and her mom brought Christen and I bags of "stress food" to the hospital in Madsion,WI with a hospital stay for Lizzy. We had become friends and we had visited her family and have done family outings with them and other families. Lizzy bonded with Brianna's mom. Lizzy got her first power chair because, after Lizzy was denied for one we used Brianna's chair in a video Briannas father did for us to prove Lizzy could drive a power chair successfully. It worked.
Dealing with so many deaths to people that were so close to me is the hardest thing I have ever experienced in my life this past few years. One death after another. Mostly it was been family members but this little  lady was from my family too.... Our SMA Family.
Please say some prayers to Brianna's family to help them get through this time and to remember to celebrate her life as she was an inspiration to so many families. She will never be forgotten in our hearts.


Now, on to good thoughts here so I can quit blubbering like a fool thinking about the loss  Brianna's life  and how it will impact so many other lives with her absence here in the physical world.

Lizzy had a great Christmas. Only had one bad illness since fall. She is getting so mature at her thoughts it scares me. She is no longer a child but, a young lady with opinions and feelings. Love her to pieces.
Here are pics of her last week in the snow here. She had a blast. She insisted going out and it was 7 degrees!!
Please say prayers for MJ too !














"We believe in miracles because, we live with one! "
www.our-sma-angels.com/elizabeth