Having a fundraiser is always exciting. It's a chance to educate and raise awareness for Parry Romberg Syndrome. We meet amazing people and I am overwhelmed by the love and support...It is also a reminder that we are different. That we are that family that I used to read about in the newspaper...that is us now! I don't really mind that part...But it is a reminder that Hank has something that is deemed incurable...that he could possibly suffer greatly in the years to come...
Oh sure, we talk about it now and then...usually when I have been contacted by another family who is struggling to come to terms with the diagnosis and trying to make sense of it all. But I don't think Hank thinks about it all the time. (I don't really know...but he doesn't seem to...) Hank is too busy to be bothered by such things. He has video games to play, baseball games to play, drums to play, books to read, bikes and scooters to ride, and schoolwork to accomplish. Hank told me a few years ago that he is cured. I like the way he thinks. So in Hank's mind, he "used" to have Parry Romberg Syndrome. I want to believe that...and for the most part I do...but that worry in the back of my head is always there and that heaviness in my heart remains firmly rooted.
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| Hank and his pals having a blast at Funderland! |
On May 11th, we had THE
most amazing fundraiser for Hank! The "Hope for Hank" Fundraiser took place at Funderland, a local small amusement park. They opened the park from 5pm-8pm, and all proceeds went to Hank. The mastermind behind it all was park owner, Ashley Edds. After hearing Hank's story from his former teacher (and Charlie's current reading teacher), Stacey Weller, this young woman took it upon herself to do something big for Hank. And big, it was! We are still grinning from ear to ear over the event! And people are still telling me how much fun they had! The park is small enough for the kids to go from ride to ride on their own, with their parents trailing behind. I hardly saw my own three kids that night, as they paired up with friends and had a blast!
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| Hank and Ashley Edds. |
Ashley advertised the heck out of the event and the turnout was tremendous! We knew about 40% of the people there...the kids' school friends, baseball friends, my friends, Jeff's co-workers...but the rest...the rest were all Ashley's doing. Ashley told me the park holds about 400 people...so that was my goal...and we hit 400 an hour and a half into the event! When it was all said and done, we sold well over 500 wristbands and probably saw at least 600 people enter the event.
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| Jeni paints Lucy's face with a beautiful butterfly! |
My friend (and fellow parent at school), Jeni Maxson, volunteered to head up a silent auction. Not only did she donate to the auction, but she got others to donate and then set it up and ran the whole thing! On top of that, she organized a face painting booth...and along with friend, Patty Rovegno, worked hard all night making kids happy. We are so grateful to all who participated and made this event so special!
May was a busy month...in fact every single day of May had something scheduled. The day after Hank's fundraiser, was his brother, Charlie's First Holy Communion. Such a special day, following a special evening. That night, we went to the Rivercats baseball game. (Minor league baseball team that feeds into the Oakland A's) It was little league night, so the boys got to walk around the field with their teammates before the game, as well as get autographs from the players and listen to the coach's "chalk talk".
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| Taking the field during Little League Night at the Rivercat's Game! |
Speaking of baseball... my last blog post was about Hank's baseball team and if we should invite them to Hank's fundraiser. I was torn...we didn't want the coach's or kids to treat Hank differently, if they knew about his PRS. I agonized over the issue and appreciated the comments and advice that people offered through the blog and our Facebook group. In the end, we left it up to Hank. Hank's decision was to keep it away from baseball...I think he just wanted a chance to "be like everyone else" and not be the kid who is having a fundraiser. So although we really wanted the league's support and his teammates would have had so much fun...I respect Hank's decision...after all..this is his life to lead, not mine. (I'm just a supporting player). I did find out after the fact, that a teammate, at the beginning of the season, asked Hank, "What is wrong with your face?" (ugh) According to his mom, Hank told him, "I have Parry Romberg Syndrome and had to have surgery." And that was that...Interesting that Hank never told me...but I think at this point he tends to protect
me! Now that the season is over, and we can look back...I do believe that Hank's coaches and teammates would have embraced him and not treated him differently...but again...it was Hank's decision.
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| Hank's 5th grade promotion |
We did invite the coaches and players from Charlie's team and many of them showed up. So, we still had support! We were very fortunate to have lots of friends who posted flyers throughout our area, including the public school system, library, fire departments, police departments and downtown stores! As well as many school parents who printed out flyers and took them to work! We are so grateful for the help!
The last weeks of school were crazy...with three school age children, it is busy! Field trips, projects, class parties, championship baseball games, karate belt testing and Hank's 5th grade promotion! Whew! I'm exhausted just thinking about it. But now...now it is summer vacation. Already, the kids have adopted the lazy ways of summer and I am right there with them. We need some downtime!
We are awaiting word from Hank's surgeon on a possible surgery date. We aren't sure if it will be this summer or fall. Of course, summer would be better so he won't miss school...but as always, we will do whatever we need to do! *You can check out all the fundraiser photos on the "Hope for Hank" Fundraiser at Funderland tab at the top of this page.*
