The Noonan syndrome family and the Arthrogryposis family lost an amazing person this past weekend. Angela had her fourth child a few years ago and they thought that she had Arthrogryposis. It turned out that she had Noonan syndrome. So I was able to learn about Angela and her family from both groups. Angela died unexpectedly this weekend. My heart is breaking for her family. She was the most amazing mother and advocate for her daughter Aubrey. Aubrey is medically complex and Angela was a rock star in dealing with doctors and therapists and keeping all of her facebook friends updated on how things were going. It is just such a loss to everyone. Please keep her amazing family in your thoughts and prayers.
Angela's passing really drove home to me how fragile life is. You never know what is going to happen. You just have to go for it and live life to the fullest. I am so grateful for my amazing family and friends.