A huge Thank You to everyone who came out to support the Birdies for Butterflies Golf Tournament on Sept 10th 2018!
The Butterfly Fund thanks you.
Hard to believe this little guy is 8 now. Time flies. I wan’t to post the heart touching words from his mother on his Birthday yesterday! xoxox William!!! Happy Birthday!
It does not get any more precious!!!!!
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!!!!
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!!!
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!
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!!!!
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!!!!
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.
Thanks to everyone who came by and brought William toys and gifts!! Much appreciated!!!
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!!!!!!