March 09, 2012

Guest Blog: Catching Up with Halee After Everyday Health!

15 year old Halee Newby and her family, long-time supporters of the Lupus Foundation of America (LFA) and its Wisconsin Chapter, were featured in an episode of Everyday Health on February 25, 2012. In her guest blog, she reflects on life since the show aired, updates about her health, and more. Thanks again Halee for helping raise awareness of lupus! Did you miss it? Visit Everyday Health Web site for video clips from this episode!

All I can even say is: wow!! My family and I had such an incredible time working with the crew of Everyday Health! It was so much fun working with Ethan and Jenna- they were truly inspirational, supportive and SO much fun to be around! However, I wanted to give you a quick update on some of the things that have happened to us since the airing of the program.

We have received emails and Facebook messages from all over the country from people we don't know who are thanking me for "putting myself out there" to help explain more about lupus, and how someone can look so normal on the outside but be so sick on the inside. We received a truly great email from a woman that said she has been suffering for the past year from what they now believe is lupus (she is still awaiting the final diagnosis). But what we thought was so cool about her email is she said, "thank you so much! My husband sat down and watched the program with me and he had an "ah ha" moment. Halee explained what she goes through so well, and my mom saying what she did, really shed a light on how someone with Lupus can and does feel. My husband finally gets it!" The awareness of lupus increased dramatically from the show- we were hoping it would touch at least one person, but it seems that it touched many more!

(L-R): Taylor Kassel, Ethan Zohn, Halee Newby, and Jenna Morasca
We also met a kid that was on Everyday Health the week prior to our episode; Amanda's Healing Hearts. While I haven't spoke with her yet, I look forward to being able to! We also stay in touch with Taylor and Bonnie. I'm beyond happy to report that Taylor is DONE with her chemo! She is currently on all of the same medication that I am on right now, but nonetheless, the chemo is over with!

While I missed a bunch of school lately with another flare, I feel so blessed with the outcome of the show. I’ve had teachers, friends, parents, and a few random kids come up to me and tell me how proud they are of me and how they look up to me- it’s incredible! I’ve also had many people tell me that I need to have a job/career as a public speaker or mass communication. That’s really an intriguing thought and it had never occurred to me! Probably because all I had to do was talk about something that I had lived with for almost 5 years now… it came so naturally!

I was so proud of my parents too- my mom only cried a few times, my dad actually did cry once, and my little brother had a speaking part! It was really cool to see that everyone enjoyed themselves and had a great time at our event. Our local Lupus Foundation of America Chapter has asked me to help during their walk this year by doing a carnival tent with face painting and butterfly tattoos. I think it will be fun to hang out with the little kids and allow them to have a chance to learn more about fundraising and what they can do to help the cause!

One of the biggest things for us has been the monstrous support from our whole community; people are already asking when our next fundraiser will be! I think we are planning on another volleyball fundraiser/ carnival event for the little kids. We are also going to an open-mike night this year in the hope that local comedians, singers, performers, etc. will come and perform. All of the money raised will once again be donated specifically to finding a cure for lupus. Through this whole process we have learned how much people want to help, how much they love us, and how much we really mean to them.

Taylor, Halee, Ethan, and Jenna with other members of the fundraiser
As always, we must thank the Lupus Foundation of America for getting us on the program, but more importantly for being there for everyone that may suffer from lupus. From the work they do in enlisting politicians involved in getting research funds, to the educational materials they send out daily to people newly diagnosed, the Lupus Foundation of America is truly amazing. And lastly, for the support they give to all of the state associations for their help in raising funds and awareness on a more grass roots basis.

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