Another "Why I love my job" thread.

[Sheldonrs]

An e-mail from a co-worker of mine:

Dylan was the first wish kid I was assigned to. At 4 years old, he knew EVERY name of EVERY Star Wars character but didn't know what a wish was so we decided to wait until he was older.

His qualifying illness - a rare form of hemophilia - has done horrific things to him. His mom shared with me that when he was teething, his crib would look like, as she described it, a crime scene. His visits to the hospital are frequent and every day activities you and I take for granted are truly life-threatening. It's a genetic disease so Dylan will always be an only child and worse yet, has watched his uncle die from it. So Star Wars - all the movies, cartoons and video games - are a respite for Dylan. They are safe.

Right after his fifth birthday, Dylan was on the computer looking at Star Wars stuff when he first learned about Star Wars weekend (http://disneyworld.disney.go.com/par...-wars-weekend/). His mom called us immediately and exclaimed that Dylan knew what he wanted to do more than anything in the whole universe. At that time the spots Disney holds for Wish Kids were already taken but we were guaranteed he was the first one on the list for Star Wars Weekend 2011.

On Saturday, we invited Dylan to meet us at Cold Stone for a little sendoff party. What Dylan and his family didn't know was that our friends at the 501st Dune Sea Garrison had been called to help get him ready for his big trip. Attached is a picture of Dylan with his new friends. For 45 minutes, he asked Darth Vader questions like "Do you remember when you were fighting and your hand got cut off?" He choreographed elaborate fight scenes with the characters. They were amazing and gave him their undivided attention - even handing over their weapons so he could "put them all in jail." It was a life-sized action-figure set and really a dream come true. And that's just the beginning. Dylan has his trip yet to come and we all know the incredible magic those trips hold.

So thank you - for all you do every day. And thank you on behalf of Dylan, his family and the 501st. It really is life-changing, life-affirming work you do. And of course, May the Force be With You.

[classicman]

You rock Shel - excellent story.

[Sundae]

Another wonderful post Shel - amazing how many people go out of their way for children who have little else left.

I'm jumping in on your thread, because this is about a child at my school (my workplace) and unlike "your" children his life is no longer at risk.
I have little direct contact with him, but we have spoken and in a school of <300 you do get to know pupils from other classes, especially as I cover 40 minutes of lunch break every day.

Kieran is exactly as he comes across in the article. He participates in everything at school and is a great kid.

From the Mail Online - no reporter credited

How boy who lost his sight aged five became judo champion 'The Blind Fury'

A boy of 10 who lost his sight after a rare reaction to penicillin has become a judo champion.

Kieran Clarke has beaten fully-sighted opposition in national competitions since losing his eye sight and almost his life - five years ago.

Nicknamed 'The Blind Fury', Kieran says his ability to concentrate is the key to his success.

'That's why I think I'm so good at judo because I take my time and wait to make my move,' he said.

Kieran said: 'I had three operations on my eyes. I had to have 16 eye drops every day and a glass rod in my eye to scrape out all the gunk.'
Kieran, from Aylesbury,Bucks, has completed six grades and is training for an orange belt and an international competition at Crystal Palace in July.

He'd never tried judo before he lost his sight, he has since won national championships including the Red Belt Rumble and 'mini mon' championships.

Five years ago the brave athlete lost his sight after a severe allergic reaction to penicillin, known as Stevens-Johnsons syndrome.

His mother, Debbie Clarke, 40 described how a simple chest infection cost Keiran his sight.

'I took him to the doctors and they gave him a prescription,' she said. 'I picked it up from the supermarket and gave him a spoonful in the morning and then one in the early afternoon.

'After I gave him the second on he reacted. I have never seen blisters appear to fast.'

Keiran suffered lesions to his skin, including several inside his mouth that prevented him from talking for weeks, a loss of his finger nails and eyelashes and his corneas burnt away, leaving him blind.

Kieran added: 'I had to live under a cover for nearly a year because my eyes were too sensitive to the light and I had three operations on my eyes. I had to have 16 eye drops every day and a glass rod in my eye to scrape out all the gunk.

'The pain was horrible but the thing I hated most was that they were still debating whether I was going to live or die.

'I didn't care about getting blind so much, I just wanted to stay alive. 'Some people ask me if I like being blind and I say "yeah, I do actually" because you can't see anything bad happening in the world.'

Paralympic silver medallist and former world champion, Ian Rose, inspired Kieran to take up the sport at nearby Wickham Judo Club before swapping to Aylesbury.

He said: 'They wouldn't take me on at first but then they saw me beat some of their boys and they let me in. They start fights differently with a blind person, you have to start gripped up.

'I like the atmosphere. Sometimes when I get upset at home I like going to judo to get out my frustration, but not in a nasty way.'
He trains with local charity Bucks Vision twice a week.

Development officer Penni Thorne has known Kieran since he became blind.
She said: 'Kieran is always cheerful, ready to help and fearless go-getting attitude make him fun to work with.'

He has now been entered into the Pride in Aylesbury awards under the child of courage category.

His mother is amazed at his reaction to losing his sight. 'He's amazing, even the nurses in the hospital were amazed at his reaction to it,' she said.
'He says it doesn't bother him, he just accepted it straight away, but I think the fighting is his way of letting out the frustration he claims he doesn't feel.
'He takes everything in his stride, some competitions have not been sure about letting him in for his own safety, but I'd be more worried about the safety of those he fights.
'It can be trying for me, looking after him, it did change a lot, but he's been so good about it that it's been relatively easy to adapt to.

'He's not vicious or anything like that, but he's good, determined and he will win, he won't be beaten by anything.'

[Sheldonrs]

He's an amazing kid with a great "view" of the world. He said something that I've said before. That blind people can't see the bad things in the world. Thanks Sundae!

[BigV]

I could take him, but he's not in my weight class.

Hmmmph.

[Sheldonrs]

A follow-up letter from Dylan's family after the wish trip:

I want to thank you for the wonderful trip you have gifted us. Thank you very much from all of us. Dylan says the Star Wars Day was the BEST DAY of his life.You guys are AWESOME and I LOVE you! And he will never, ever, EVER forget this trip.
We have taken many photos almost 2000 between our camera and my sister Danielle's. Danielle had even borrowed my mom's camcorder.

You and MakeAWish are truly a blessing. Everything was so perfect and a MAGICAL experience. Once I thought it was the greatest moment and his wish had come true, it went a step further. I couldn't control my tears when Dylan had the meet and greet with the characters. His facial expression was an expression I had never seen before. Unfortunately, none of us got it on camera , it was so quick and we were just as surprised as he was. In the video, we have the back of him and when he made the expression and got excited, he also did a little jump at the same time. It was when James Arnold Taylor, the voice of Obi Wan, Dylan's favorite character, said, "I have a bad feeling about this" in Dylan's ear. Ashley the voice of Ashoka Tano is another one of Dyl's favorite from Star Wars the Clone Wars, she did lines from the episodes with him. I bet Dylan was thinking, finally someone who knows the lines. Dee Baker (voice of Captain Rex/Clone troopers) and Bruce Spence were also surprises for him too. He was also very excited to meet Anthony Daniels, C3PO! They seemed to have a connection

We spent the 1st day at Magic Kingdom, Dylan rode on all the rides he wanted too. His favorite was Pirates of the Carribean. That evening, we visited Epcot. We were chased out by a rain and wind storm, that lasted for about 15 minutes, the park was almost closed anyways. The 2nd day was his special day. He did the meet-and-greet, received his wonderful gifts, he had a lot of Star Wars toys, but amazingly enough did not get any duplicates. He even received a lightsaber replica that he has always wanted but we could never get for him, THANK YOU. He walked in the parade, attended Jedi Academy (he enjoyed that very much, he was so serious), took pics and autographs of more Star Wars characters and made a lightsaber. He got on all the rides there also. His favorite was, Star Tours. He rode it 6 times. The scariest was Hollywood's Tower of Terror, because his bottom came off the seat! The next day, we went to Animal Kingdom, hit all the rides and went back to Hollywood Studios. Dylan"s choice, of course. He was so sad to leave that night, he cried and fell asleep.
The next day, we went to Universal Studios, Adventure Island first. Dylan loved the Marvel area. He went on the Spiderman ride twice, it was our 1st ride and our last ride of the day. We had a great time, we got drenched on the Popeye wet ride and the Jurassic Park ride right afterwards, Dylan loved the wet rides. We made all the rides Dyl was able to go on in both theme parks at Universal. Dylan loved everything, even the rental car. He made a lot of friends, as usual, at all the parks. All adults of course. It was a great experience that we all very much enjoyed!!!

Again, THANK YOU with all my heart. His wish, definitely, has been granted in many ways. You made it so special for him, this memory he will treasure for the rest of his life.

[Sundae]

How wonderful. And again I love the way doors can open for children who are suffering.
But they don't open automatically - all credit to those of you behind the scenes getting the work done.

Interestingly enough, one of our student teachers noticed Kieran just yesterday.
She couldn't believe he was the child mentioned in the article, not having seen him before.

Yes, I reassured her, that child getting occasional guidance as he runs around is the same boy from the article. She honestly expected to see a boy with a white stick in the paved area, alone and confused. Not being mean to her - she is very young yet. I was just pleased she got to see a blind boy with full physical confidence. I've never seen one before, but then I'm old enough to be her mother and was far less surprised.

[Clodfobble]

It's interesting, I was thinking about this just the other day because I have a friend with a blind autistic daughter... I wonder if it's easier to have once had your sight, and then lost it, than to be blind from birth. On the one hand, you have a memory of the way the world looks and kind of a mental map in your head, and that can help greatly with interacting with everyday objects. On the other hand, if it's from birth you've been honing your other senses from the beginning, rather than having to re-learn how to rely on them more intensely.

Either way, Kieran is awesome!