Monday, September 10, 2012

Inspired by Evan

I really have enjoyed planning and hosting my "It Makes Cents to Help FIRST" fundraiser this past May. I am still in awe of how successful it was and how many generous people participated and donated for an amazing organization. We are so thankful to have so many amazing people in our lives. Together we have raised an enormous amount of money for the FIRST Foundation, who help fund research for a cure.

We are very fortunate that some of our friends were inspired by Evan to compete in marathons and triathlons to help our family and to help support FIRST. My sister is a marathon runner. She has competed in many marathons and ran in the Boston Marathon 3 times. The last time she ran the Boston Marathon, in 2011, she had a special shirt made in honor of Evan. She wanted to help raise awareness for Harlequin Ichthyosis and the FIRST Foundation. Unfortunately, we were not able to attend nor were we comfortable bringing Evan into the busy city during the marathon. I have been there to support her in Boston before (and went to college right on Commonwealth Ave) and it is crazy busy and intense, so I was concerned about Evan and the enormous crowds. Lynn did great and we look forward to cheering her on next time.
Lynn warming up

Ever since Evan was born, a friend of ours was dedicated to help our family and Evan.  She actually started a blog months after Evan was born to raise awareness and to help support our family. She also called into a local radio station during the Christmas season of 2010, to a charity that helps needy children. On 96.5TIC-FM, the morning show Craig & Company were having their annual 'We Are the Children' fundraiser.  Jenny decided to call and nominate Evan as a possible candidate for this fundraiser.  Off air, she told them about Evan and his condition. She explained to them how much work it was for my husband and I to take care of Evan and his skin. She suggested that we could benefit from a new washer and dryer which would help ease my workload, especially since the ones in our rental house were old and not efficient. The radio station called me a few weeks later, on air, and we talked about Evan and our daily routine. They then told us that they would be delivering a brand new washer and dryer with a sanitizing cycle, to help with Evan's care. I was so touched at how generous this charity was and that Jenny initiated the help. 

As a runner, Jenny was inspired to compete in her first marathon for Evan. Not having a lot of time to blog, she created a private Facebook page to help promote the marathon that she planned on running. She earned a lot of money for our family and we cannot thank her enough. It was very exciting to go, to the Hartford Marathon 2011, to watch Jenny compete. We were so proud of her as she ran past us, just strides away from the finish line. We are very grateful for her dedication & gracious spirit; and to everyone who was so generous by donating to our family. Jenny will also be competing in the Chicago Marathon, this year, in honor of Evan.
Jenny and Evan at the finish

This past August, a good friend of ours participated in a triathlon in honor of Evan. His efforts raised over $1,000 for the FIRST Foundation. Originally from Connecticut but now living in Florida, Tom travelled up north to compete in this event. He was not use to the hills and fresh water since he was use to competing on the beaches of Florida. It was a warm afternoon for Evan but we were there to cheer him on. We went to congratulate him at the finish line where he met Evan for the very first time. And YES that is an ice cold Miller Lite in his hand. Read more about Tom's triathlon and how he supported the FIRST Foundation HERE.
At the finish with Tom and Evan

We have had a very successful year with fundraisers which supported the FIRST Foundation.  And we have more friends who plan on competing in the Hartford Marathon this year in honor of Evan and to support FIRST. With all of these fundraisers going on you would think I'd be ready for a break, yet I am ready for another one. I have always planned on doing a t-shirt sale for the FIRST Foundation. With the holidays approaching, I thought it might be a good idea to host another fundraiser. Not only will we be able to earn donations for FIRST but a custom made t-shirt could make a pretty nice gift. I am still planning details and need to get my design down on paper. I am very excited to be crafty.
Stay tuned if you are interested. Mostly, this fundraiser will be local since it may be difficult to send a lot of packages out. I DO have a pay pal account so if anyone is extremely interested in purchasing a t-shirt, contact me at I hope to have things ready to go and shirts made before November. 

I obviously cannot talk about fundraisers and not mention one of the most generous fundraisers we have ever been included in. The 'Possum Queen' is the most entertaining and enjoyable fundraiser I have ever been to. This annual event takes place on New Years Day each year, in a neighboring town. The mission is to help local families who are dealing with medical challenges and the finances associated with it. Evan has been included two years in a row for this charity. We live in an amazing community with so many gracious, generous, and selfless people. Read more about 'Possum Queen' HERE.

Evan has inspired so many. He is my little warrior and has made such a positive impact on my life, with all things considering. He has made me a better person and has made me appreciate the little things in life more than I ever have before. There is not enough room in my heart for the amount of love I have for my precious boy.


1 comment:

  1. You folks do not know me, but I have been following your blog and the blog of several others that you also follow regarding children with EB. I have been managing the Prayers for Cheyenne Rae FB page and also have created her website at ON her FB prayer page it was shared with us a FB page for this little guy with EB. He was born at Auburn Memorial hospital had never seen a case like this so he was transferred to Crouse, where the doctor had only seen 2 in his entire career.

    I just wanted to share this with you, as I see this family needs your help. I am also going to send a message to Cortney and Jonahs guys have done so wonderful with your little ones and each other, I pray you all will be able to bring some comfort to these folks. God Bless.