We are just four days away from Ethan and Abigail’s school campaign in recognition of World Rare Disease Day!
The principal has gone above and beyond anything I could have ever hoped for with this campaign. Not only are the entire staff and student body encouraged to wear denim jeans that day (for Jeans for Genes Day), but all 450+ third through fifth graders will be making bracelets for the 7000 Bracelets for Hope project. These bracelets will be attached to cards where each student will share a message to another child who is fighting a rare disease. The K thru second graders will be coloring jeans ribbon printables and sharing messages of hope.
What blows me away is that she has not only dedicated an entire hour of school for this project, but she did it during a week of very important state testing. It is so heartwarming to know that Hannah, Ethan, Abigail, and the other families who are living in situations such as ours deserve a chance to share our story and create awareness.
We have also been working to get the media out to this event. Either print, television, or both. Nothing has been finalized yet, but I’m keeping my fingers crossed.
The flyers for this event started being distributed to the students in the school last Friday. From what I have been told, teachers aren’t just passing it out, but they are taking the time to explain why we are celebrating “Jeans for Genes Day.”
Daddy and I have been very careful to keep tabs on how this all effects Ethan and Abby. Everyone in the school will now know our family situation, and that is a lot of responsibility for kids their age. Ethan is incredibly excited and hopes to be on TV. Abby is a bit more reserved, but I really don’t think she really gets what is going on.
Between the planning of this school event and the fundraiser on Monday, 2/28, at Hannah’s clinic, Hannah has dominated most of the conversations in this house, moreso than usual. As much as I love putting this all together, I know that come March 1st, I need to take a step back and put our collective family of 5 back on the main focus. It isn’t that I won’t do more events in the future, but we can space them out more.
World Rare Disease Day comes only once a year. Those involved with these two events truly know how important this day is to us.
But now I must get off the computer and get back to cutting elastic string. String for 450 students to create beaded bracelets is not going to cut themselves (but gosh I wish it would!)
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