Art Show Benefit

Last week was a huge week for Elias. His outing to the zoo, Grandma M & Uncle Ryan visiting, and of course our the Art Show Fundraiser that was being put on to benefit Elias and Fanconi Anemia Research. With all that going on we paid for it this week being bogged down with a little more intense schedule to make up for the previous week. All well worth it. The week was amazing for Elias!
Elias was in attendance at the Art Show. We again struggled with the decision to break the rules for the second time in three days. Given the importance of the event, the setting, and a mostly adult attendance we felt like we could really control the environment. Elias was certainly the man of the evening. Dressed in a light blue dress shirt with navy pants and his red Mickey Mouse power tie, Elias captured many hearts. He was adorable! If you follow us on Facebook you may have caught some photos through the course of the evening. If not Do not Fret. You can check the ones we had the opportunity to capture here. He made it through most of the evening before we had to change him. It was very hot with all the people. Towards the end of the night there were raffle giveaways. It was decided that Elias would do the honors of picking the names out of the box. You can see a video clip here of one of the drawings. The event was wonderful. We had an opportunity to explain and share FA with people as well as witness some amazing art work. The group of artist that put this all together did an amazing job and we are very thankful for their time and talents. The show runs for a month. It was a very touching and humbling experience. Elias was received so positively and inspired many. There are so many businesses that donated items, individuals that volunteered and people that deserve a huge amount of thanks. To everyone that participated at any level and attended, we are most gracious for your support.
As we said a very exciting week and Elias did remarkably well. It was worth breaking the rules a little and taking a chance. While it was a success it is something we can not allow ourselves to be lured into a false sense of security. We may try another outing in the Fall to the aquarium, but until then it is back to normal with protective isolation. We were blessed to have these opportunities and Elias had a wonderful time. We will venture out again in time, we just do not want to press our luck. The ability to appreciate this is much more rich because of the circumstances. Thanks to all for the wonderful showing of support and comments. We hope his experiences touched your lives and hearts as much as it touched ours. 

A Request for Elias!

One of the most common things commented to us about Elias is his smile. Lord only knows how this child that has endured so much and will continue to be challenged with manages to keep a smile on his face 99% of the time. Well here are two opportunities to help keep Elias smiling.

The first is for our Facebook followers. Chase community giving has begun it's yearly voting contest. The first round goes until May 4, 2011. It takes 2 seconds to follow this link & follow the directions to Vote for the Fanconi Anemia Research Fund. You are going to want to see this because Elias photo is the one EVERYONE sees. One look at his adorable face and he will capture your heart! We know, we see it happen  a lot! The top 100 organizations $25,000 and continue on to another round. That is $25,000 for research that just might one day provide a cure for Elias and others with FA. There is a lot of groups and the only way we have a chance is to capture every opportunity. So please after you vote won't you please share this with your friends.

Speaking of friends, here is the second opportunity to help Elias smile more! In celebration of International Fanconi Anemia Day which is May 1st (also Elias! 3rd birthday) we want to remind you all of the online donation challenge. You all know 10 people right? Each of them know 10 people. That is 100 potential donors just like that and $10 is all you are asking. 100 people @ $10 is $1,000. Follow the math and see that 100 of us initiate this challenge and pushing it we would bring in $100 thousand dollars for research. The beauty of this is that we all know more than 10 people. A huge thank you to all who have already donated.

Remember, Fanconi Anemia research is not only helping patients with FA, but it is positively impacting various cancer research as well. Breast, prostate, ovarian, & head and neck cancers are among them. Without FA research some of the advances in their research may not yet have been discovered or more slowly developed. So fanconi anemia research has the potential to reach and help millions in the general population. We thank you for your support with Elias! as well as these two activities.

A Full Week

It is the end of another busy week, exhausting week. We had appointments everyday this week (some days multiple), except for Friday. Most of them

were various therapy appointments, with IVIG and some research lab work thrown in the mix. Health-wise Elias is doing well for the most part. We just finished another 3 week course of vancomycin (second course in 6-1/2 weeks) on Monday for C-diff and already we are seeing the beginning symptoms of a flare up emerging. I imagine Monday morning we will be calling GI for the next plan to try and beat out this very chronic issue. There has been some conversation between Elias GI doctor, His BMT doctor and the chief doctor of infectious disease on alternative treatments. Probiotics have been mentioned in the past, but BMT would rather try other options first. We do not fully understand the reason behind the reluctance, but she is a VERY good FA doctor that we trust explicitly. She is not 100% opposed, but would rather not jump right in if there is an alternative, which apparently does exist. So we will place this in their very capable hands and see what comes next.