February 3, 2010

Sweet Baby Zane

When Scarlett was first diagnosed with SMA Type 1 I was in shock. The doctors explained that SMA was a neuromuscular disease that resulted in progressive muscle atrophy and weakness. I couldn't believe that they had diagnosed my baby girl with a terminal illness. I immediately went to the internet searching for answers and maybe some hope. I stumbled upon a website called SweetBabyZane where I read about a beautiful baby girl named Zane. Zane had SMA Type 1 and earned her angel wings two days before Scarlett was born. She was only 5 months, 16 days, 1 hour, and 3 minutes old.

I had been on a lot of SMA websites but there was something special about Zane. I felt like I somehow knew her. When I looked at pictures of Zane I felt like I was looking at Scarlett. I ended up emailing Zane's mom Hillary and we talked the next day. Hillary instantly put me at ease. I was panicked and I didn't know what to do... She went over all of the machines and medical care that would be needed to keep Scarlett happy and comfortable. She also suggested that we set up a fundraising campaign through NTAF to help with her uninsured medical costs. They had set one up for baby Zane.

Last week I got a call from Hillary and she told me that she was transferring all of Zane's NTAF balance to Scarlett's NTAF fund. I am not kidding. I couldn't help but cry. The call couldn't have been at a better time. I had been on the phone all morning fighting with the pharmacy trying to get them to cover Scarlett's RSV vaccine. I still do not know how to properly THANK Zane, her family and all of the people that donated to Zane's NTAF fund except to say THANK YOU!!!

I hate hate hate SMA but I am thankful for the people that it has brought into my life. It's the random acts of kindness that help me to put one foot in front of the other.

Thank you Sweet Baby Zane! Scarlett loves you! For more information on Zane please visit www.SweetBabyZane.com

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