We have had a lot of firsts these past few weeks! The biggest for us is the tremendous amount of love and support we had during our first SMA event. We were anxious about actually meeting in person another child with SMA and his parents. There were so many friends and family there that helped ease our fears — the whole thing was overwhelming and wonderful at the same time. The 5k was a huge success, raising somewhere around $30,000! Wow! And with a crowd of around 500 runners, walkers and cheerleaders, awareness about SMA is growing! I hope those of you that did come had a chance to meet Caleb, the guest of honor. Boy, what a cutie!!! He is 5 years old and full of life–he didn’t want to stop playing fetch with us! I wish we could have stayed for hours just playing with him and soaking him up, as well as talking to his wonderful parents! Caleb is type 2 like Miller. Thank you to everyone that supported us and SMA research-both at the race and from afar. Our cup runneth over!!
We also had the privilege to meet one of our neighbors that has Duchenne Muscular Dystrophy two weeks ago. We are already fast friends! She is actually 26 (and a female, which is quite rare) and has far outlived the doctors original prognosis. Elizabeth and her mother have been a wealth of information for us and we are so blessed to have them on our street! Definitely God’s grace at work!!
Potty training and our first dentist appointment and our first appointment with the pulmonologist at MUSC and standing!! with his new HKAFOs (Hip-Knee-Ankle-Foot-Orthotics) all by himself — just a few more of our other firsts these last few weeks! As usual we have stayed very busy!! I can’t believe how quickly the days are gone! I will say, I won’t be sad for this crazy winter to finally be done!
This weekend Miller will receive his own manual wheelchair (he has been using a demo) donated by Wheelchairs 4 Kids and Access Healthcare (Dr. Dave) in Charleston! Susanne at Wheelchairs 4 Kids has been working hard for several months to find Miller a specific, ultralight wheelchair and sponsors to help make this happen! We are so grateful for this organization and would love for everyone who is following Miller’s story to attend the presentation! It is at 10am on Saturday at Cannon Park downtown Charleston. Come on!