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Extraordinary Measures
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TOPIC: Extraordinary Measures
#37537
Extraordinary Measures 4 Years, 11 Months ago  
I've been busy with a lot of personal issues over the past few months. We lost our three year old son, and I discovered a rare and previously unidentified version of a genetic disease in my youngest son (that also took the life of my oldest son).

My oldest, Henry, loved Star Wars and always wanted to fly to Hoth to see Han Solo and his tauntaun.

Over the past weekend my name was drawn for tickets to the New York Premiere of Extraordinary Measures with the cast and about 100 other celebrities and an after-movie private party this Thursday.

Harrison Ford stars in the movie called Extraordinary Measures and it is about the Crowley family who never quit and found a treatment for their children who have a rare genetic disease.

Anyhow, you can read all about the family (and when the pictures are fixed see Henry in his Yoda costume) at:

www.crowleyfamily5.com/index.htm

(Sorry Stefan, I didnt have an extra ticket but if my guest bails on me I will be the guy begging for directions)
Aracon
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#37538
Extraordinary Measures 4 Years, 11 Months ago  
Aracon, I am deeply sorry for the loss of your eldest, and for the news about your youngest. I hope that these events have awakened the strength to persevere, and an appreciation of the things you still have.

I don't think anyone here would object if you added a link to a charity that supports research against the disease in question.
jackattack
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#37539
Extraordinary Measures 4 Years, 11 Months ago  
Dear Aracon,

I am so sorry for your loss. I cannot imagine how terrible it must be. Anything I say seems futile, but I wish you and your family strength.
I am living in Seattle now, or else I would have been happy to meet you and "guide" you around before and/or after the premiere. I hope it goes fantastically.

Thank you for opening up to us, I am sure the thousands of DF forumites are pulling for you as well.
Stefan
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#37540
Extraordinary Measures 4 Years, 11 Months ago  
Aracon,

Words may be inadequate, but to the extent that they can convey the depths of my sympathies, know that I feel for your loss.

Best wishes to you and yours.
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#37541
Extraordinary Measures 4 Years, 11 Months ago  
I can't say anything better that Stefan nor Kradlo, simply can't. I really send you my more sincere condolences and the best best wishes.

Greetings
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#37542
Extraordinary Measures 4 Years, 11 Months ago  
My thoughts and prayers are with you, that's a tragic burden to bear,

L
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#37543
Extraordinary Measures 4 Years, 11 Months ago  
Getting ready to have my first child this tragic news has almost completely overwhelmed and terrified me since I first heard of it. I can’t even begin to imagine what you and your family are going through and dealing with – my heartfelt prayers for you and your family.
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#37544
Extraordinary Measures 4 Years, 11 Months ago  
Your family is in our thoughts.

-Shadox
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#37545
Extraordinary Measures 4 Years, 10 Months ago  
Aracon,

However doubtful that the words of a stranger might bring some solace at such a time, please know that I have told my family about this and we all send our deepest regrets, and fondest thoughts to you and your family.

My son is only 4 months old, and I am greatful for every day with him as I am sure you have been and are with your children. From one father to another, strength and courage.

qab...
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#37546
Extraordinary Measures 4 Years, 10 Months ago  
Thanks everyone for the kind words.

It was so very difficult to lose Henry. He was such a bright boy. He loved Star Wars and knew just about every character, every jedi and every miniature from posters. I am a Star Wars fan but it was his passion. I think he would have rivaled all of you Sci-Fi DF fans out there in badgering Stefan for more sci fi...

We found out he had (and Jack has) a rare genetic disease and have begun research into the new version of disease and have tracked it back to the 1800's from Prussia and to about 20 or more women in the 1800's who lived in both Rockford and Poygan WI. This means 100's of women could be silent carriers and have a 50% chance of giving it to their sons and it will likely kill them. The worst part is that most doctors will call it SIDS, pneumonia or septic shock and never realize there is a defect on the BTK chromosone that is causing this. My mission is to track down anyone who has that defective chromosone and alert them and we are using ancestory.com to find lots of information.

The premiere to Extraordinary Measures was good... not a great movie, but one good to spread the word. Without Harrison Ford it would have been a lifetime show but highly hollywoodized.

I got to talk with John Crowley and met many of the stars but was next to Girard (King Leonidas from 300) and had no idea who he was!!! @doh never said a word to him. @doh

There is no research for a cure of agammaglobulinemia at the moment. It is an orphans disease but it does have a treatment. I am lobbying to try and get a $5 blood test for all kids across the nation for something called "bubble boys disease" that was passed here in Wisconsin right after Henry's death by the efforts of our immunologist at Childrens Hospital. I hear they had a congressional meeting on it last week and the test has uncovered one child who had the disease who would have died and they did a bone marrow transplant and cured. This wouldnt have saved Henry but it would save those with a worse version than what he had and Jack has. There isnt a $5 test for what they have, yet (it is $45). Yes, Henry could have been saved by a common $45 blood test that needed to be run 6 months after his birth (they do it at birth but not afterwards). sad.
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#37547
Extraordinary Measures 4 Years, 10 Months ago  
Harneloot,

The 3 years, 4 months and 9 days with Henry were incredible. I wouldn't trade it for anything. The lesson learned from my family to yours is to stand up for your kids when you have a gut feeling something is wrong and the doctors keep telling you they are normal. Get a new doctor, go to another hospital, do research on the internet, etc. Fight to get them the best care possible and never quit.

Kids are wonderful :) Jack is coming along so very well despite his infusions every 3 weeks. He won't be a Henry and shows no interest in Star Wars but he does like Dora the Explorer (ack), lol.
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#37548
Extraordinary Measures 4 Years, 10 Months ago  
Those are very difficult things to go through. I feel for you, just do the best you can during times like this, and hang in there.
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