Our carnival fund raiser was a huge, huge success- $5846.00 en counting.. It was also a ton of fun! The best part was the turnout- there were over 300 people that came to support our ladybug girl. A very unexpected, wonderful thing that's been happening for days is people keep knocking on our door with checks made out to The Children's Tumor Foundation- one was for $400.00! We don't even know who the people are, it's amazing. The local paper The Record Pilot did a front page story about us 2 days before our charity carnival. I think that helped, people have no idea what NF is. I try to stick to the definition of NF when I'm talking to people, it's so confusing because it manifests itself differently person to person. It's very difficult to find 2 people with the same complication of NF. I try to also keep a lot of the issues Julia has private- I don't want her to feel embarrassed later. I talk about her growth and her brain because those are 2 of the complications she has I worry the most about. At least 20 people volunteered at our carnival- half of whom I'd never met before. They stayed all day and interacted with the kids- they were just fantastic! Thank you!
Another really fantastic thing that's happened is the amount of people we see walking around Glen Cove with Team Ladybug shirts! My kids get so excited! They scream and jump up and down "look. look- its our team shirt!" It's been so much fun to run into people wearing them and Julia just beams when she sees it.
I'm starting to feel like we're making an impact. At least in the awareness we've raised. The best part of this is as Julia grows up she won't need to define NF to every person she ever meets. It's out there, accept her for what she is or walk away from us. It is what it is and my ladybug is one very lucky little girl- so many people care about her, so many people love her.
Our Team Julia Ladybug has raised 35 thousand dollars this year for research to find treatments and a cure for NF. I sometimes feel like we're racing against time. I feel like I'm trying to outrun NF before it has a chance to hurt my little girl.
Another really fantastic thing that's happened is the amount of people we see walking around Glen Cove with Team Ladybug shirts! My kids get so excited! They scream and jump up and down "look. look- its our team shirt!" It's been so much fun to run into people wearing them and Julia just beams when she sees it.
I'm starting to feel like we're making an impact. At least in the awareness we've raised. The best part of this is as Julia grows up she won't need to define NF to every person she ever meets. It's out there, accept her for what she is or walk away from us. It is what it is and my ladybug is one very lucky little girl- so many people care about her, so many people love her.
Our Team Julia Ladybug has raised 35 thousand dollars this year for research to find treatments and a cure for NF. I sometimes feel like we're racing against time. I feel like I'm trying to outrun NF before it has a chance to hurt my little girl.
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