We have been very busy with the Hope for Gus sponsored production of Oliver Twist! It was incredibly fun and the kids were amazing. Both Isabel and Gus were in the production. . . but Gus was adamant that he would NOT go on stage until the very last moment, when he went out there and was a huge ham!
Above is a photo of him as one of Fagin’s gang of thieves, during a musical number.
But all I can see when I look at this photo is the fact that all of his friends have their hands above their heads (as choreographer dictated) and Gus could barely raise his hands above his ears.
I know this makes it seem as if I am focusing on the negative. . . he had a great time during this production and felt a huge sense of accomplishment being on stage. . . but this tiny little difference shown in the photo feels like the beginning of the end.
Next year. . . will he even be able to walk on stage? If he’s in a wheelchair, will be even be able to participate and will he WANT to?
For this reason and many more, is why I am trekking to Everest Base Camp in October. To raise awareness and money for this horrible, devastating, life-taking disease that is haunting my son and my family everyday.
Every morning I wake up and hope that Gus is not weaker than the day before. . . every night when I put him to bed, I pray that he will be able to get out of bed the next morning with out assistance.
But even tonight, as I went to kiss him, he wanted a drink of water. I got it for him, and he said, “Help me sit up, mommy.” My heart broke for the 100th time this week.
We are determined to find a treatment or a cure for Gus and thousands of kids just like him. Please help if you can and donate to our Everest to End Duchenne campaign. We promise that every dollar will go to promising medical research. Thank you so much!