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!
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!
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, cookies, and popcorn! We received lots of small donations and got rid of almost all of our JUNK!!!!! Even better!!!!!
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 & Tracy, Linda & Lori, Andrew & Brenda, Jessica, Jon & Amy, Dave & Megan for your donations so far. I am very appreciative and so is my sister Anim.
Brandy, Arden & KyLee are going to have a lemonade and snack stand. They are so excited to help and be a part of it. Thanks Tracy!!!!!!! If anyone wants to stop by, our house is open and I will have some pizza’s there to thank you all for your kind efforts!
Thank you again so much. For any of you who still have stuff to donate, please let me know if you need help getting it here. I can make another run this coming week to do pick ups!
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 I have been going through with my sister, or I should actually say what my sister is going through. That is, with Baby William. When the news first came out about three months ago, I/she received a lot of support from people whose hearts were touched by the tragic situation that she is in. Thanks again so much to all of you who helped out at the time.
As with most things, it hard to keep the support going once the news is not brand new, or the first time someone has heard about it. I was sitting there trying to figure out new ideas for ways to help, without asking people for actual donations. Anim had given me a list, about a month ago, of so many of the household items that they need for the long term. That is because they have had to move to be closer to the hospital. The story of William, born just three months ago, is here on my personal blog that I created just for him (for those of you who don’t know) Click on the Hope for William button to the right. Most of you already know the story so I’m trying not to be repetitive. The list was long and so far I have had very little success in getting these items. A lot of these items are things which many people that I have spoken to, have told me that they would love to donate. The problem, and the reason I have had very little success in getting these, is because they are too costly to ship.
So my idea: YARD SALE!!!!!! One of the items on the list was a rocking chair. Cammie Latta had a rocking chair to donate but when I researched the shipping price is was nearly $400. Not Going to Happen. I know we all have junk laying around in our houses and basements that we just plain old Don’t Want, or that we would like to donate to a good cause. The problem we have, or I have, (maybe I should speak for myself) is that it’s not enough to have a full blown yard sale. Guess what people buy at yard sales? JUNK! Guess who wants your junk? ME!!! Why? Back to my “great idea”. On Saturday July 17th, I am going to do a yard sale at 6664 Serena Ave Castle Pines (tentatively). If the HOA will not allow it I will find an alternative place. Alisa? Maybe your house? I have about 20 items and will get more, but no one is going to stop unless I can get a bunch of eye catchers. You know, like mass amounts of junk that catch the eyes of those weekend yard sale shoppers! I will do all the work of the yard sale but for anyone who is interested in helping out, all I would need is for you to drop off your stuff to me the day before. I will take one hundred percent of the proceeds and apply it towards the purchase of the items on Anim’s list. She can pick those items up directly in San Antonio. Depending on how many responses I get to this, it will determine whether or not I will be able to do this. Does anyone have anything that you would like to contribute?
Thank you for taking the time to read this.
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 was to injure his top layer in any way, it can cause it to blister. Complications from this can ultimately cause blindness. One of his eyes is glazed over so she is asking for your continued prayers.
The other biggest challenge is his hands. He has learned how to chew on them thru the bandages which is making healing a challenge. For his development he does need to be able to do these types of things including propping himself up on his belly. It’s all about learning a good balance in what to allow him to do and not to do.
He is growing very fast. He is very long so he actually wears cloths that are for babies much older than he is. I got to hear his voice on the phone. He was doing all kids of cute little noises and cooing!
Needs – Items in RED have been spoken for or are being provided!!!!
(the house is wood/cabin/country style)
Crib (larger/not bassinet)
Dishes (Sets of 10) – cups/plates/bowls
Silverware (sets of 10)
Pot sets (stainless steel)
Pans (cast iron)
Bunk-bed – and 2 single mattresses
Shelves – for 3 bedrooms, and 2 for living room
2 bedroom desks
Living room set
Rug – for living room
1 single bed – and mattress
1 double bed
1 queen bed/double bed – mattress for queen bed
television and DVD player
ipod/MP3 player and speakers
laundry soap – hypoallergenic, w/out any dyes or fragrances added
changing table – without rail around it, and preferably with shelves
or drawers, for the dressing changes
Hooked on Phonics program
Flashcards – picture facts/colors/ shapes/ etc
kids books – preferably educational
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 little house just outside of San Antonio. Right now they have a nurse that will visit the house once a day for a few hours to help with his care. All of the bandage changes will be at home and he will see a doctor once a week, I believe. That will be minimized as time goes on and the real “Doctor” becomes Anim. At some point the parent actually begins to know more about this disease and how it effects their child better than anyone. I can see how that could happen. He is growing so much as you can see in the pictures. He is well over 10 pounds! Over all he is very healthy and strong internally. Last I heard, his feet and hands were still healing. He has a lot more small blisters all over but no major infections, which is the most important thing.
Right now I am working to help raise funds to help with their long-term needs in order to support William. More reciently, I am working to to try to find specific items that they have sent me that are needed for the short term. A BIG THANK YOU goes out to Cammie Latta and her husband Buck. They have been working with their Church, Wellshire Presbyterian, to try to get some of these needs and items sent down to them.
If anyone is interested in receiving a copy of this list of items, I would be happy to forward it on. The biggest need right now, is a car. Or some sort of gas efficient transportation. Smaller needs are things such as baby T-shirts (100% cotton with no buttons or velcro that opens in the front). Prayers of course are very appreciated by them and all of your sweet thoughts and notes are as well! Here are a few new pictures of William, he say’s to send his love, “says Anim”.
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 so he is not on the antibiotics for now. His feet have a lot more tissue on them and are continuing to heal slowly. He will receive house calls from a nurse daily at home for now to help with the daily bandage changes. He still has blisters in his mouth and some new ones that are quite large on his back. She said he is so alert and even pushed himself up on his arms to hold himself up, that was when they tried to lay him on his belly. He is a strong little boy! My sister is staying strong and again is extremely thankful for all of your support! She will stay in San Antonio for now because she likes his primary doctor. Your donations as of right now, will go to help her put a deposit on the small house that she will be renting. My Dad John, is moving the family up to live with them and help them out. It’s a full-time job for two people so Thank you DAD! You are the best!
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 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.
You can read my daily updates by clicking on the Epidermolysis Bullosa/Hope for William category. To read Williams story from the beginning, start at my first post at the bottom of this blog. I have also added some videos of Baby William. If you have any stories or experiences please feel free to share. Thank you for visiting.
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 blisters so they have started him on antibiotics. The good news is that he is eating really well. Some days his mouth looks really good, other days it bleeds while he eats, in spite of it, he still eats incredibly well. He is actually growing quite a bit. He is now nearly one month old. Most EB babys have a very big problem getting nutrition which causes them to have issues later in life from malnutrition. Thankfully that does not seem to be the case with William, at least not right now. He actually heals incredibly fast. One day he will have a horrible looking blister or infection and the next day it will be practically gone. The doctor actually said it’s unbelievable how fast he heals and he has never seen or heard of anything like it. He is such a strong little baby and has a lot of fight in him. His left leg is still the biggest issue but his other foot and hands are doing a lot better slowly but surely.
Update: Received the diagnosis from test results: William suffers from Dystrophic EB. The good news is that it is debatably not the worst type, where it is considered terminal within the first year. However it is quite severe and the effects can be quite debilitating. Most often patients will live to the age of about 30 years old. He is still in the NICU but they are weening him off of the morphine. His hands and feet are healing a little every day. He maybe heading home in two weeks! At least that is what they are predicting right now.
Here is a link to the description of his type of EB: http://www.debra.org.uk/types-of-eb.html
If you would like to donate to help out William and his parents please click on the Donate button to the right. Thank you very much!