Words in a Picture!
A Big Thank you to everyone who supported the Butterfly Wings for Butterfly Babies Event!
Seriously?
It does not get any more precious!!!!!
You are invited!!! Butterfly Wings for Butterfly Babies!! – July 19th 2012
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JOIN THE CONTEST and SILENT AUCTION!!!! Create A Butterfly for A Butterfly Baby! In honor of Baby William and in an effort to help raise money for EB children and & EB Families in need, we are inviting you to join us for an evening of fun and laughter. We are asking children to create a piece of Butterfly Art. Paintings, Drawings, Crafts, Photographs, Butterfly Jewelry, Books or even a Piece of Butterfly Furniture! These pieces will be entered into a contest that will be voted on by the attendees of the event to be held on July 19th. The winner will have a $1000 donation made in their name to the Butterfly Fund. Other items will be part of a silent auction or used as raffel prizes. Parents are asked to bring any item they can that could be part of the auction as well. Please drop it off no later than the day before.This will be a fun event and a way to teach kids how they can get involved and help change a life.The event is from 4:30 to 9:00 at 244 Detroit Street Denver 80226. Adults will enjoy cocktails and fun with friends. Enjoy a night out in Cherry Creek. Thank you to LUXE Group Real Estate for donating the space. The winner will be announced at 7:00!! The winner will get special recognition!!! We will provide hors d’oeuvres, cocktails, music and fun stuff for the kids.Please get involved and let us know if you would be willing to come or even volunteer! We need your help!!!! But most of all we want you there!!!!! Please post this on your wall and invite as many people as you can!Please contact Larina McClain @ Larina.mcclain@me.com 720-275-9663
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One of my favorite pictures!!!!
Thank you to everyone for all of your sweet letters after Fox 31 Denver aired his story!!! They brought tears to my eyes!!!!
Here is a link to the segment from Fox 31 Denver news station that aired tonight. What a cool way to raise awareness! Thank you so much Fox and Libby Weaver for doing the story. William’s family thanks you!!!!
http://kdvr.com/2012/04/25/little-boy-with-painful-skin-disease-here-for-a-purpose/
Thank you Libby for telling my Story – William
Watch Williams Story Tomorrow Night on Fox 31 Denver!!!!
I’m so excited. Williams story is going to air tomorrow night at 9:00pm. Prime time on Fox 31 local here in Denver. PLEASE TUNE IN AND WATCH if you can!!!! I sure hope people are inspired to know that there are little angles out there with such an appreciation for life! I’m thinking this is going to be a good story and will give people a whole new outlook on life!!! If nothing else, at least we can spread awareness. For those of you that are local let me know what you think. If you are not here in Denver it will be posted on the Fox website I’m told! Yeaaa!!! 
William goes Piano Shopping!
Thank You to Chris and Amy Kilroy for the amazing gift!!!! Just in time for his Birthday!!!!! This was recommended by his therapist to help him keep his fingers moving. William is a big fan of music and musical instruments. His Grandpa John is the guitar player you see in many of the pictures. If he is ever crying, the sound of music will instantly put him at ease. Now all we need to do is find a way to get him lessons!
William Turns 2
Happy Birthday William!!!! You have come such a long way.
I miss you so much!!!!
Williams Goes Home
I can’t find words to describe how great it was to have Baby Bill here for the week. I’m sad to see his highchair sitting there empty. But I know that he is happy to be home and in the comfort of his familiar surroundings. He was so cute when we dropped him off at the airport. We had a hour to spare so we ate at the Chop House in the Airport. This was the first time that Billy ate anything solid other than the few blueberries that he ate the first and second day. He ate potatoes and cream spinach and even found the energy to toss jelly packets across the room with full force, trying to make us laugh. I was cute to see him so happy. Here are some pictures at the airport and right before we left the house. William got to see it snow! We will miss you guys so much!!!!
Interview with Fox 31 Denver
Today we took him to Children’s Hospital here in Denver. Dr. Anna Bruckner runs the EB clinic and does a fabulous job, from what I’m told. I was referred to her by nurse Jeri who works for DEBRA (see.DEBRA.org). Our purpose for being there was not for treatment but to meet with Fox 31 Denver to do a story on William. Libby Weaver deserves most of the credit for this one. She set the whole thing up and even sacrificed her time on her birthday to take calls and help coordinate things to make this possible. She did the interview with Dr. Bruckner who talked a lot about EB. She does not treat William so that was more general information about EB, care, and research for the cure etc. Then in the very cute and comfortable waiting room, Libby interviewed Anim. At one point I had to hold back tears because it was so touching. I can’t spill it all here so I will have to keep you updated with news on when it will air. We got a lot of footage of William’s daily life that they will edit into the segment. Not sure how long it will be so I guess well just have to wait and see. Stay tuned!
Thank you Libby Weaver so very much for making it possible!!!! And thanks to Dr. Anna Bruckner for taking the time with us. We really appreciate it! It’s going to be a great story!!!!
Bandage Changes
These were done twice while he was out here. Typically it can take three to four hours. It took us four and a half. The first day he had a really rough time. The second time he was much more calm and very happy at the end when it was all over, as you can see from the pictures. Poor little guy, you can certainly tell how painful it is for him. It is truly a life changing experience to go through with him. He has so much grace to deal with the hand he was dealt, and to do it the way he does is amazing to see. It makes you so grateful for everything you have and sheds a whole new light on what I would call difficulties in my life. Anim is amazing. She is the best mom in the whole world. They have such a special bond and she knows exactly how to handle him and keep him comforted throughout the process. I have never seen her complain she is so positive. I’m sure that rubs off on him.
Photos from William and Anim’s visit.
First Snow!!!
Little Will Party.
Thanks to everyone who came by and brought William toys and gifts!! Much appreciated!!!
William is Coming to Denver!!!!!
I’m so excited. William and his mother Anim (my sister) will be visiting Colorado. They are coming out to pay a vist to the sisters as well as all of the people that have been suporters of them over the last two years. William is doing really well and is a happy little boy. He is growing and walking. He even does push ups! I’ll see if I can post the video of that here. It’s adorable!!!!! Please pray for his liver. They are working on ways to boost his iron as his levels are close to being dangerously low. I bought a giant jar of molasses for his meals while out here!!! They will in Colorado for one week. We are hoping to put together a short video of him to try to raise awareness for EB while he is out here. Stay tuned as we may be able to get the story on Fox 31 Denver!!!!! Here are some more pictures of Baby Bill, or as I call him Bob!!!! I think he will have many nicknames by the time he leaves!!! Colorado Loves William!!!!!!
Raising Awareness at Brandy’s School!
Good job Brandy! Way to go getting them all to vote for your charity!!!! I wish I could show you the Power Point she created. It was very Well done!
Updates on William: Here are the latest pictures. He is doing well. Happy and Healthy. He still has all of the normal skin issues but no complications as of right now so that’s great news!
Latest Picture of William
