Looking back, this has been a very fun filled and busy year!! Brooke and Brielle made it to Disney World TWICE! Once for the Familes of SMA and the second time as flower-girls for a very special new friend. Brooke was the proud recipient of a power wheelchair and Standing Dani while Brielle was very happy to get a new manual wheelchair due to her growth! Brooke and Brielle were featured in Midwest Energy Cooperative’s Country Lines Magazine and also raising awareness on the front page of the Cheff Therapeutic Riding Center’s Newsletter! Brooke was very sick with RSV last April but thankfully she was able to overcome the virus without a hospital stay. It pushed back her last clinical trial visit at the University of Utah until August. She is doing very well but we are still keeping a very close eye on her and getting regular blood draws to monitor medication levels. Brielle completed her first year of pre-school and loved every minute of it! She has continued to take unassisted steps and can now walk 60-90 feet! What a huge step (literally) against SMA and it brought all of us to tears watching her. Her slogan is, “I can and I will’ and is featured in The GSF’s “Never Give Up!” video. August was “SMA Awareness Month” and we did all we could to raise maximum awareness. Please read in detail in the time-line below. We were fortunate enough to make two trips to North Carolina this year also! The first trip was for the “Annual Rusty Rudder Golf Outing” and the second was just for fun to visit their Aunt Christen and spend some time getting spoiled rotten. Next up was Halloween! Brielle dressed up as cowgirl Jessie and Brooke was cowboygirl Woody! They had a big suprise at hippotherapy that week to find their horses had costumes too! So much fun! November 22nd turned out to be a monumental day - Brooke took her first step(s) independently!! After having the diagnosis of SMA fall upon us, taking steps/walking is something that we never thought we would see Brooke or Brielle do. We had no idea where the future would take us and where the health of our daughters might be. SMA is a cruel disease but Brooke and Brielle have been such dedicated fighters and work so hard every single day to push the limits and keep (and even increase) their strength. Sometimes they have to miss out on playdates and other fun things because they are so committed with various weekly therapies, doctor appointments and appointments with specialists. We also have to be careful during the winter months to try to stay away from the germs of the cold and flu season. Sickness can take a huge toll on SMA children and it’s not something we want to take a chance with if we don’t have to! Hopefully a treatment/cure will be on the horizon for SMA. We know researchers are working very hard and we appreciate the support of our friends and family this past year! With your support, we were able to raise a total of $8,618.39 this year for Families of SMA in Brooke and Brielle’s name for SMA research. Thank You!!
I’ve decided to kind of do a time-line for our year in review of significant events. You can click on any links and it will take you to the original post from earlier in the year if there is something you’ve missed!
May 8 –Local friend, Sydney Potjier, lost her battle to SMA. :(
August- “SMA Awareness Month”
Brooke and Brielle decorated a gingerbread house and visited the park to see the manger scene and Candy Cane Lane. So much fun!
This was the first year Brooke was not afraid of Santa Claus!
She was so excited to see him and wanted to give him hugs.
Merry Christmas Everyone!