Today was the IL Families of Spinal Muscular Atrophy Walk and Roll. Although it was over 90 degrees outside, it was a HUGE success!!! Over 500 people attended. Over $35,000 was raised and the Ally’s Angels Team raised over $1000. An ENORMOUS thanks to family and friends for supporting our team (many who have done it several times over the years). It was really nice to have my mom there, and each of my sisters with their families. Mama K (aka Kathy Kosla) also joined us, brought lots of raffle donations and dressed up as a clown to do tattoos for the kids. Sandi and I added to the raffle table. Our friends, Tito and Anthony Renghini volunteered AGAIN as DJs!!!!!! The Lane Tech Cheerleaders (Kristyn’s team members) also spread their spirit and HOPE starting off the walk with cheersstunts and spread out along the walk to cheer walkers and rollers through the heat. The highlight is really seeing soooooooo many other sma kiddos and their families and some adults with SMA. I also got to spend a little time talking to a couple of families with angels in heaven. Their children will NEVER be forgotten and one day there WILL be a cure for SMA. Two docs from Lurie Children’s Hospital even attended, Dr. Nancy Kuntz and Dr. Christine D’Donato. Its a nice time to come together as we work toward a CURE and SUPPORT for families affected by SMA.
Ally is doing okay. She has her splint (1/2 cast) from her hip/butt down the back of her right leg to her ankle. She really has only left her bed 3 times in the last 2-3 weeks. We have to really, really limit movement so that her hip will heal on its on. She is doing pretty good with pain and only has motrin occassionally (NO pain meds the last couple days). She is pretty moody if we can’t find the right cartoon/movie, but I don’t blame her. She is six and wants to be out and about and at school with her friends. I think that is also why she did so well today since its nice to be out of her room for extra special occasions. She had an umbrella and used a special cooling towel called a Frogg Togg to keep her a little cooler. Of course, her trach and vent help in this extreme heat too. We will attend school tomorrow for one last day and then Kindergarten graduation is on Tuesday!!! Graduation is a HUGE milestone for Ally and I promise to take lots of pics. The splint stays on till minimum June 27th and then we go back to ortho for xrays to see how it is healing.
Please continue your good thoughts and prayers!!! We appreciate everyone’s support!
Enjoy our pics from the Walk and Roll…
 |
| 2012-06-10 IL Walk and Roll FSMA |
Angel Ally Blog - SMA Type 1 
Leave a Reply