This post may be a slight departure from our usual journal entries but I wanted to take a minute to thank someone and to ask, if you so choose, to get active for our SMA families.
First and foremost, I am attaching a photo of an incredible gift I received in the mail today. I have no idea who sent it to me, but it is such a precious gift. Now my little Getty will be visually with me on a daily basis and I that whoever sent it to me truly is a terrific person. I just put the necklace on and I just realized that the charm that is in the shape of a heart has a chime to it. Now when I am away from Getty and I hear that chime, it will be like she is saying, “Hi Mom.” Terrific! This gift lifted my spirits greatly today and just knowing you took the time to do that really meant so much to our entire family. Thank you.
In the time that we have been introduced to SMA, one thing we know is that there currently is no cure, but there is research being done and lots of people are raising money and really pushing for progress. Mark and I found out through the FSMA website that there currently is a bill in Congress called the SMA Acceleration Act H.R. 2149 & S. 1158. This will allow for a national clinical trials network for SMA, fund education, and expand and intensify federally supported research, proper screenings, and much more.
So if you have time, Mark and I would ask you to write a letter to your Representatives and/or Senators to ask them to support these bills. We are working on our own letters to our Rep. Doris Matsui and Senators Boxer and Feinstein. The more our elected officials are aware of this genetic disease and how it affects families, the more likely we are to get their support.
Mark, Getty and I just wanted to thank everyone for all the love and support. The guest book helps us start our day, every email, card, prayer, phone call, casserole, and treasured gifts are such motivators for us and it just helps us focus on our little Getty. Thank you!