EB is the saddest disease I know of. It is a genetic disorder that effects 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 painful bandage changes and infections. My darling nephew William, born on March 16, 2010 was diagnosed with this condition (Epidermolysis Bullosa) and is currently in the NICU at University hospital of San Antonio. I created this page to create awareness and support for my sister and baby William, as well as all others who are suffering from this disease.
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!
Anim – “I am grateful to have had another year of life with you! What a privilege that is. I’m grateful for the beautiful person you are today and all that you are growing into. I’m thankful for every life you’ve ever touched or changed for the better, and for all the people who have impacted and loved us in return! It’s been one of our greatest blessings.
Bill, I am thankful for YOU; for your quiet, steady strength, your bright mind, that naughty, mischievous twinkle you get in your eyes, your wit and humor, the interesting and often profound conversations we have, your resilience, your honesty, your depth and thoughtfulness, your determination (and stubbornness 😀), and that calm and peace in your spirit. There’s so much love, and life, and goodness in you! You’re beautiful “through and through”.
Just this last week you told me, “I’m glad I chose to come to Earth. And I’m glad I chose to be in this family.” I am glad too, my love! I’m grateful and honored you did and that I get to be your Mommy.
You’re 8 years old now. There was a time in those first days when it was hard to imagine that we could or would ever reach this point. I remember talking about it with one of your doctors who’s become very dear to our family throughout these years. He told us that one day you would go to school, and one day when you were 8 you would be able to go to a special camp. I couldn’t picture it clearly then, but you are, and you’ve done, and will yet do so much more than that! It’s greater than I could have understood then.
It’s been faith and grace that have carried us this far and, I believe, will continue to.
Happy birthday boy that I love 🙂!
I am grateful for all we will keep learning and experiencing – both the joy-filled and difficult things – throughout this gift of another year.
YOU bring me so much joy Willis Billis ❤!”
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.email@example.com 720-275-9663 or Jon McClain at 303-725-5646 to make arrangements to get your item picked up no later that July 5th.
Thank you so much for supporting this cause!!!
To read the full story click on the HopeforWilliam tab at the top or watch this short story from Fox 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!!!
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.
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!!!!!!
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 updated pictures as I still think he is the most beautiful baby on earth! I might be partial! Ha! Thank you again to everyone who sent Christmas gifts, words and prayers to Anim and Willy baby.
An update on his EB struggles and progress:
I spoke to Anim today. William had been doing quite well for a little while. So well that he was managing to go through the bandage changes without morphine. His left leg got bad again so they had to put him back on the morphine for the last two changes. She said it is amazing to see how obvious the negative effects are of the morphine now that she has seen him go without it. It causes him to be very itchy and slightly constipated. Right now his challenge is going potty. It is extremely painful for him when he goes because that area has been affected. He cries uncontrollably until it passes, which thankfully does not last too long. She tells me that actually at this point it is only score and swollen in that area but that most kids with his type actually rupture their rectum in places each time they go. So he is extremely lucky so far. Thanks to Anim for knowing exactly what to feed him to keep it soft and also avoiding giving him too much morphine. Right now they are looking for alternative pain killers to avoid these problems. On the positive side; his hands have stayed mobile. At times he is even able to go for a short time without the bandages on them. He still loves music more than anything and any kind of musical instrument. Thank you Chris & Amy Kilroy for your sweet donation, with that Anim is going to get William a keyboard. Not only because he loves music, but because it can be very therapeutic for him with mental stimulation and hand coordination. It should help to keep him stretching his fingers and using hand and arm muscles.
Kisses to William!!!
For anyone who is interested in how they can help feel free to give me a call. You can also click on the donate button on the right. Chris and I are looking into possibly doing a charity Golf Tournament in the future for EB kids. If anyone is interested in getting involved or has any great resource feel free to contact us to get involved!!!
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 me us out to the event as guests of honor. William was chosen to be one of the beneficiaries of the event and we were happy to provide some sort of representation. William was not able to travel with his mom but they were very grateful to be a part, if even from afar! It was a great event with live music, great food and a silent and live auction. Everything at the ball was donated and everyone there was a volunteer. It was amazing to see so many people come together for such a great cause. During the event they held a ceremony where everyone received a live butterfly to release into the air. The little boy in the pictures name is Garrett. As Brandy was helping him release his butterfly it landed on his face and Chris got a picture of it. It was an incredible site and touching to see people’s reactions. Thank you again Laurie. We are very grateful!
Back from my trip to San Antonio!! It was a good trip and I got to spend a lot of time with lil William! He is five and a half months now, so big and such a cutie pie. I spent three days there and most of the time was spent indoors. It is very hot there right now but should start to cool down soon. He loves to be outdoors and look at the trees and the sky.
He was sleeping when I arrived and woke up with the biggest smile on his face, he was so happy to have a new funny face to look at! He gets very excited and does a lot of kicking and trying to grab things with his little wrapped up fingers. He cannot roll over yet and is not too fond of being on his tummy. We did some tummy time and he made it very clear that it was not ok with him! They visited his dermatologist the day before and everything is looking good at this time. There are no major infections nor any complications.
As of right now they are doing bandage changes every other day. I was able to help with this one and it took a total of four hours. That is the biggest obstacle they are dealing with right now. The amount of time and care that he needs is hard to comprehend. What is even more amazing is to see how Anim handles the situation and manages the day-to-day tasks. She is truly amazing! After only three days I felt as though she just had a normal healthy baby that she was caring for. That is because she has so much patience, and if there is any stress she hides it very well. Williams’s favorite thing is Music!!! Bill (William’s nickname, which I protested ha!) would be crying hysterically, then as soon as Grandpa pulled out the guitar and started playing, he would instantly stop and be glued to the strings. He is very alert and seems more aware of his surroundings then your average “normal baby” of that age.
Our biggest concern and hope, is that his eyes stay protected and that his mouth heals. You can tell that it’s painful to eat, but he eats well in spite of it. His eyes are the same as his skin and can blister easily which can ultimately cause blindness. He has to be allowed to do normal activities that a developing baby would do such as suck on his fingers, grab things and be unrestricted in his movements. If not, it would hinder his development which is very important for his future. Finding the proper balance is a constant. I was sad to leave but happy to see things were going so well. I took some pictures and a short video of Anim for the Butterfly Ball this coming weekend. The event is in Sonoma and the beneficiary is William and another darling little boy named Garrett who also has EB. Can’t wait. Love you William, miss you already!