This morning I called him at his home in Utah to tell him that I loved him and wish him luck, when I was done talking to him I handed the phone to Nick (my husband) so he could talk to him for a second. As they were hanging up Nick said "well, alright I love you man!" and Dayne responded with "Love you too, take care of those girls for me". I love it! He also let me know that the plane ride didn't go too well because he was so nervous and nauseated.
(Here he is on the plane before heading to Baltimore.)
As you can see in this picture, Dayne's back has an extreme curve in it. This is part of the progression of his disease. His bones are so soft that they are curling. He is unable to sit upright. His curvature in his spine has gotten so bad that his abdomen or stomach is actually resting on his thighs. So if you have ever ridden on an airplane, you know how uncomfortable those seats are already. Now imagine what it would be like if you were too short to have your feet touch the floor, and you were unable to sit upright. Pretty miserable.
Two years ago I was able to go with Dayne on his trip to Hong Kong for his wish from the Make A Wish Foundation. His wish was to have a karate lesson from Jackie Chan. And he got it! Jackie Chan was one of the kindest people I have ever met. He paid so much attention to Dayne. It was awesome.
This plane ride from Salt Lake City, with all of our connecting flights was about a total of 21 hours. By the time we landed in Hong Kong Daynes lower legs were so swollen they had doubled in size, he wasn't able to sit back once, and yet he NEVER complained. When we got to Jackie Chans office (huge building) he was more than prepared for us. He was doing an interview for Forbes magazine when we arrived so we sat and watched for a little while. Then he took us to a room with snacks and a movie to occupy us while we waited for him to finish his interview. Once he was done he took us to a warehouse where he keeps all his product. Did you know Jackie Chan has a clothing line and all sorts of other goods that he sells? Well, he told Dayne to pick out whatever he wanted and gave us all tons of gifts. After we hung out with him for a little while he took us all out to dinner with his friends. At the restaurant he taught Dayne a few karate moves to do with his hands and told Dayne to "Never give up". He told us not to waste our food and ate food off of our plates! We had such a great time.
Here is their new "home away from home" for the next three months.
This is a close up of Daynes leg. One of the reasons for this surgery and trip to Baltimore. When Dayne was four he had steel rods placed in all his long bones to help him avoid fractures. Well, turns out his bones were so soft that they couldn't even support the weight of the rods and the rods ended up slipping through the lower ends of his bones, so the doctors replaced them and they were able to stay in place for a while. What is happening here is (as mentioned above) his bones are curling around the rod. The rod is now being held in only by a few layers of skin. I cannot imagine the pain that this is causing him. So the doctors are going to take bone grafts from his hips and combine them with some sort of medical cement, and replace that rod (somehow) and fill the holes in his bone with the new grafting material that they are making. Hopefully he will have a straight leg within a couple of weeks.
I will post updates as I get them. Thank you so much for all of your kind thoughts and prayers and for thinking of Dayne. If you are able to purchase a necklace or keychain, a large portion of the profit will go to helping Dayne. #nevergiveup
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