More Photo’s of William & our trip!

Please pray for him.

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Updates on William March 27th – 31st.

Update: March 31st: Back home. Missing Willy and Anim. He’s feeling a lettle better this morning. Again, Anim wanted me to thank everyone that has contacted her and sent words of kindness and/or donations to help them out. We will all continue to keep William in our thoughts and prayers!

Sweet boy

Update: March 30th: I head back today. Sad to leave William but he will stay with me in my thoughts and prayers. I left him with a mobile to look at that should cheer him up. I have posted some videos I took of him while I was there. You can go to youtube and type in “EB Patient” and the Hope for William viedos are posted there. Or you can click on the link here.  I am encouraged to know that research is underway for possible cures for this desease as seen on this youtube video I watched this morning. 

Update: March 29 4:00: Today I went along to see the dressing changes. His left ear is not doing good and has started to fuse together. The good news is that his feet looked a lot better. They are actually beginning to heal. Dr. Gong told us that she believes that he will be able to walk someday. That made Anim smile. She also told us about a new company that makes special clothes for these kids. They are made of silicone. It’s very helpful because they do not stick to the skin. William is still on morphine but they want to slowly start weening him off. His mouth looked a lot better today too. There was just one blister under his tongue that I could see.  

Update: March 28th 11:00am: So sweet. We, myself, Anim, Nicole (sister) and John (grandpa)spent most of the day with Willy in the NICU. He looked so much better then yesterday. His chin is healing nicely. He does have a lot of new blisters mostly on his face and belly, but they are smaller. His mouth has healed substantially from yesterday and he was able to eat without his mouth bleeding. It was so cute, he just loves to be held! His favorite thing is when grandpa or his mommy sing to him. Thankfully it’s not me singing, ha!  He is still on Morphine every six hours, but they have switched his bandages changes to every other day. The most important thing right now, is that his hands and feet begin to heal better, his toes are down to bone and it is still very painful for him when these bandages changes take place. Test results have still not come back from New York, so much is still in the air. Anim and Ezra wanted to sincerely thank you all again. They said they are so appreciative of all of your sweet words to them and they thank you so much for the support. It makes me so happy when I see what great friends we have and how many people things like this effect positively. I told my sister I will never complain again! Yep, there I said it!!!!!! Ok yeiks! Ok I had better run, I will keep you all updated!

Update: March 27th 2:00pm: Went to see Willy. Today was a sad day. He doesn’t look too good. What is amazing to me is how well Anim is handling the situation. Her motherly instincts have kicked into high gear. There was no better place in the world this baby could have been born. He is extremely loved and well taken care of. All of the hospital staff are amazing. She has said, “I know there is a reason for all of this and I know there is a purpose, something good will happen out of it, I just know it”. Wow a whole new perspective. He is such a special case that he is getting a lot of attention. I actually got him smiling in the picture below. We love you William!

Hope for William – My nephew with EB

William Vinson was born on March 16th 2010. He was initially a very healthy little boy. Within a few short hours, William developed signs of a very serious complication with his skin. Shortly there after, he was diagnosed with Epidermolysis Bullosa (EB) a chronic, painful, genetic skin disorder with no know cure.

At this time parents Anim and Ezra and awaiting test result that will determine the severity of the disease, and what the treatment plan will be. They are not sure what the future holds at this time. Currently they are at University Hospital in San Antonio. They have been forced to move from their current home to be near the hospital. Thanks to the Ronald McDonald House for putting them up at this time. For the last year, Anim has been working as a full time volunteer for a charity that brings children’s books into Mexico and other third world countries. Her life has now drastically changed, from being in the position to give to others, to now being in need herself.

Many of you have asked where you can donate to help them out in these difficult times. I have set up this page to give information to anyone who wants to help and wants to stay updated. Thank you all for your sweet thoughts and prayers! They are very much appreciated!

If you would like to donate money to William’s family, the Vinson’s please click on the “Donate button” to the right.

Update:  Test results have just determined that the type of EB William suffers from is Recessive Dystrophic EB. At this time William is still in the NICU, receiving high doses of morphine. Parents Anim and Ezra are waiting to see what the treatment plan will be and are learning how to care for him.