My granddaughter Blakely (age 8) has been blessed to attend several “day camps” in the Nashville area this summer. Blakely is a little unusual in that she seems to thrive on social interactions, especially with her peers. I think she tends to get a little bored at home and likes to be on the go! None of these camps were particularly designed for special-needs participants, but with a little pre-coordination and the help of some wonderful individual volunteers, Blake was able to participate. Here at GP2C, we tag these kinds of experiences as #RisingAboveRett!
We are always amazed, humbled, and thankful for the efforts of so many people to be inclusive of Blakely in activities we normally attribute to “typical” kids. In the evening after one of the camp days, we received a text from Blakely’s aide that went something like this:
“Looking forward to following Team Blake and praying for all of you… sweet “E” said today, “Blake is getting her cure for Rett soon. And then she’s going to talk, and use her hands, and run!” It just melted my heart.”
Of course, we immediately shared this with “E’s” mom, and she replied:
“She was Face Timing with my dad tonight and showed him a pic of Blakely… my dad said, “I’m praying for a cure!” And her response was, “it’s coming soon, Poppy!! They have a medicine for it that they are making sure works, then she will be cured!”
From the mouths of babes… Sweet “E” (Blakely’s good buddy) is my inspiration for the month.
We should all be so hopeful that the research, development and highly-anticipated trials produce the results that “E” has so simply outlined. Our adult mentality has a tendency to keep us reserved when we think of potential outcomes. We know there are a lot of variables and many potential hurdles to overcome. But just for a bit, maybe we should all think like sweet “E”. Hope is the greatest motivator we have, and #HopeInAction is what we strive for at GP2C.
Please enjoy the rest of our newsletter! We have some fantastic information from Carolyn and Jenny in our Family Advocacy and Support Team section, as well as the kickoff for the Rett University Summer Book Club with Susan and Kourtney. Finally, don’t forget to book your back-to-school consults early… slots are filling fast for the remainder of this year!
Have a great July!