Tag: EB
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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!!!!
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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…
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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…
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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…
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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!
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Willy Updates!
Sorry I have not been on here in awhile. I have been on Facebook quite a bit and have posted some pictures there. William is growing and is now starting to stand with help. He is nearly 9 ½ months now. His eyes are still blue as can be! I wanted to post some…
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Pictures from the Butterfly Ball
It was a success! We had a wonderful time. Thank you Laurie Sterner you did a terrific job! The butterfly Ball was a benefit put on last week by Laurie Sterner in Sonoma California. She started helping EB children years back and has done amazing things for the EB community. I met her online and she invited…
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Thank you all! Results from the Yard Sale……..
Hey Everyone! Thank you so so so very much for you contributions towards the YARD SALE! You helped to make it a success! We we able to raise $1,188 in donations for baby William and his family!!!!!! It was a long day but a lot of fun! The kids had so much fun selling lemonade,…
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Yard sale for HopeforWilliam Update: July 24th!
Hey guys, just giving everyone an update on the Yard Sale! I have moved it to next weekend. It will be on the 24th from about 10:00 to 5:00 or so. I have had a really great response so I think it will be really good. Thank you very much to, Alisa & Matt, Matt…
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Hey guys this is Really Really important to me. I want to ask you to please just take three minutes to read this.
I hate hate hate asking people for favors and I am not a fan of chain e-mails (which this is not) and I don’t appreciate solicitors. I had what I thought, was a really good idea and I want to see if anyone else agrees. Most all of you know, through my facebook postings, what…
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Update: May 19 2010.
Pictures from William’s first doctors visit outside of the NICU. William is doing good! The first night home was a little rough but he is settling in nicely. “Getting sleep has been a challenge” says Anim. Her biggest concern right now, is William’s eye. His eyes are much like his skin, very sensitive. If he…
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Update: May 10th. 2010 -William went home!!!
William went home last Monday. I was not able to chat with them because they were a little busy, as you can imagine. He did very well in the transition. He got to wear clothes for the first time two days before, to test it out. He looks so cute! They are renting a small…
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Update on William! April 28th 2010
So I talked to my sister today. It looks like they will be discharging him on Monday! If all goes as planned with no complications. They have made an exception to the rule, “No morphine sent home”. He is a rule breaker!!!! He has so much energy. His infection on his belly has healed up…
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Epidermolysis Bullosa
EB is the saddest disease I know of. It is a genetic disorder that affects about 1 in 50,000 babies worldwide. It’s an extremely painful disorder that causes blistering and deterioration of the skin with the slightest touch. Children are forced to wear bandages most of their life to cover their entire body and suffer from extremely…
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Update on William: April 12, 2010
I spoke to Anim this morning. She was on her way back to the hospital. They were going to do bandage changes. They were weening him off of the morphine but had to up the dosage back up yesterday because he had been feeling a little bad. He has a slight infection on his nipple from one of the…
BIRDIES FOR BUTTERFLIES 