UPDATE 2.0:
Thank you so much to everyone who offered their assistance and input. Avi created the actual link that I used, but there were many others who offered their help as well!!!!!
UPDATE: If anyone knows how to take a picture and create a hyperlink on it via html code so that I can put the logo for the foundation in my sidebar, could you please help me?
Here in the bloguverse, I have a reputation. Yes I am a foul-mouthed, inconsiderate, self-absorbed freak, but even I have been touched by this situation.
There is a family that I know, through my daughter's soccer team who is fighting a courageous battle so valiantly that it sometimes brings tears to my eyes. Their youngest daughter was diagnosed with Tay-Sachs about two years ago and she is the strongest, bravest young lady that I have ever been blessed to meet. I can't even begin to explain to you the battles that Dakota has gone through or the struggles that her family faces every day. I am reposting an e-mail that was sent to me by Dakota's mom that can explain this situation better than I ever could.
Please take the time to read it and learn more about the disease. The family is not raising money for themselves, but for the Cure Tay-Sachs foundation so that one day, in the not so distant future, they can finally eradicate this disease.
Dakota is such a warm and sunny little girl, that you can feel better just by being in her presence. I am not asking you to donate money or time or anything else. What I am asking is that you take a few minutes to educate yourself and if you feel moved, pass along the message. I did receive permission from the family to post this information because they are fighting this thing tooth and nail and I am sure that I speak for them when I say thank you for your time.
Dear Friends,
As many of you know our beautiful little girl Dakota continues to battle Tay-Sachs disease. We have created a video to introduce the world to our very strong little girl. Dakota is now 8 years old and was diagnosed with Tay-Sachs disease just over two years ago. Tay-Sachs is a genetic disease that has no treatment or cure, and is ALWAYS fatal in children. Dakota risked her life nearly two years ago when she went through a very painful and complex cord blood transplant where all her blood was replaced with new blood, with the hope of eliminating the disease. The transplant may have helped, but the disease is still there. Dakota has been nicknamed the “Hope Child” by other Tay-Sachs parents because of her courageous battle to beat this horrible disease. But the clock is still ticking….
We have medical specialists all over the world that we are in constant communication with that have assured us that the cure is within reach! The challenge is the funding necessary to convert theory into clinical application. We have become involved with the Tay-Sachs Gene Therapy Consortium that has created an international team of experts dedicated to converting hopeful animal models into useful human clinical trials. We have no choice but to take matters into our own hands and raise the monies needed to potentially save the life of our daughter and her many terminally ill friends around the world. We need to find a cure for this disease so future generations of children like Dakota and families like ours don’t have to endure this agony.
With the help of our family and friends, we have started a fund raising campaign called “Dakota’s Dream,” designed to raise money for the Cure Tay-Sachs Foundation (which is a 501(c)(3) tax exempt foundation). We are declaring November “Dakota’s Dream” month, where corporations, schools and churches from all over are collecting money on our behalf. On Saturday, November 24 we are organizing children of all ages to collect money in their neighborhoods to support Dakota’s Dream. We hope to have 1,000 kids each collect $100 on this day. Hopefully we will surpass that number of kids helping other kids.
Please take 5 minutes of your valuable time to watch the DVD that was made to give you a small understanding of the magnitude of the situation. Yes, we need money. But more importantly we need to educate people about Tay-Sachs disease. After you view the video, please feel free to pass this e-mail along to anyone and everyone you know. The disease is found in every part of the world, among all races, religions and genders. This is one disease that we CAN and WILL find a cure for in the next few years - but only with your help.
Thank you for taking the time to listen. Please watch the video and visit our web site for further information about Tay-Sachs disease and how you can be a part of Dakota’s Dream on November 24, 2007. Thank you and God bless.
Link to Dakota’s Dream video: http://www.curetay-sachs.org/dream.shtml
Link to Cure Tay-Sachs Foundation web site: http://curetay-sachs.org/
OK, so if you all aren't touched by Dakota's story, then there is no hope left. I never ask ANYONE for ANYTHING, but this is the one time that I am asking for your attention.
I promise that I will get back to posting about swearing in foreign languages and my close encounters with my hairdresser.
Thank You from the bottom of my heart!!!!!
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27 comments:
You may be a "foul-mouthed, inconsiderate, self-absorbed freak", but you're a caring "foul-mouthed, inconsiderate, self-absorbed freak"
This post and video touched my heart. I feel for these families like Dakota's and I will support this. I had a beautiful little nephew who died very young with something like this. I seem to remember a post where you listed 'mean' and 'not very compassionate' as personality traits of yours. I knew better and now I have proof! You're a sweetheart underneath that beautiful exterior! Now stop smoking, darling, for me? (that's the only time i will ever say that). Luv ya, ADW
In all reality, thanks for sharing this. It always strikes me whenever I see things like this because I'm a parent myself.
Never take things for granted, I suppose.
Hedonist - Thanks. Only sometimes though.
Marky - Usually I am mean. Does that count?
Beefcake - Dakota is one of the sweetest, strongest little girls that I know and her family is wonderful. Her story should be told.
Oh that poor little girl. I'm still wiping away tears. Hopefully your post along with others will bring enough to light and help find a cure.
And as much as I love your foul mouth, I'm always touched when you blog about something like this :)
Mim - I was openly crying when I saw the video and I KNOW HER!!! It's awful what they are going through.
Just out blog walking - very touching post. I'll be back to read more, hope you don't mind if I link you.
http://danzer1986.blogspot.com/
chk it out
awesome read!
Email me babe, if you need help with creating a button. I'll see what I can do.
thoughtnuggets AT hotmail DOT KOM
Wow. Just wow.
As for the picture on the sidebar, I save it & then upload to photobucket - that will give you the code. E-mail me if you need more help.
I am so very touched by little Dakota and the video of her, and I thank you for sharing, ADW. I will be revisiting your site tonight and going back to her webpage to see how I can help.
Dakota and her family are in my prayers.
This is one reason that I don't want kids.
It's a crying shame that so many ,who could do so much good, do so fucking little for others so that they themselves can live in huge houses and drive overpriced cars. Wouldn't it be nice if every person made the commitment to give a boost to just one other person or cause? [sigh]
And I just got paid today, so imagine my luck! heh.
You are such a good person for sharing this with everyone. It is always more heartbreaking when something like this affects a child.
If you still need help with the HTML photo issue, email me and I'll help you.
adw - this is an incredible post. Thanks for sharing this. Did you get help with the logo? I was able to save it as a jpeg but I'm not sure if that's what you need. If you want it email me Jenno55@yahoo.com
How can there still be things that are fatal 100% of the time in children?
How can something so awful possibly be?
I need to go home and hug the shit out of my kids.
Lorelai - I will stop by and visit soon.
Maven - thanks!
Tug - thank you as well!!
BottleBlonde - just knowing that other people care enough to watch the video is great.
Avi - you are a great big softie and we all know it.
EA- it is a shame, but each of us does what we have to to get by sometimes. I am hoping that more people will be aware of this disease and how they can help raise awareness in others.
Memphis Steve - thanks so much!
Jenn - thanks. I have the jpeg, it is the html script that I don't get.
Britt - it makes you realize how much you love your children. And I think *ahem* even people without children understand that love a little better as well.
I created this page for fun to see if I could make the 'button link'. It looks like it works so unless you want a different photo I can send you the code at an email address of your choosing. It's pouring rain here.
Marky -thanks for the help!!! I have the sidebar up and running now.
You're awesome! Such a love.
I'm glad you got it done. I know this family and others will appereciate your efforts. I learned something in the process too. Hey this isn't a TOTAL waste of time.
Awww look at your cute soft side.....
It breaks my heart to see sick children, I tend to cry just a little too much..
I agree with the charming hedonist. you have a big caring heart.
It's not fair that little kids have to fight so hard for life, not fair not fair not fair.
You may be a "foul-mouthed, inconsiderate, self-absorbed freak" but you are OUR "foul-mouthed, inconsiderate, self-absorbed freak" and I mean that in a completely non-stalker type of way.
Hi ADW ... I find what you are doing very commendable and heart warming. I used to be like that, supporting every cause that came knocking on my door. I no longer do that and here's why. There are just too many worthy causes and they all have examples of the suffering their particular disease causes. I decided to look at this with my head instead of my heart.
I'm not sure if you are aware that I am diabetic (type 1, almost 40 years) and suffer from severe major depressive syndrome. They are both under control and I am doing well. But I have seen, up close and personal, what both of these diseases can do to people. If people tried to support every cause that came a-knocking on their door nothing would be accomplished because all of these people and resources would be spread too thin. With my head I decided to concentrate on the 2 illnesses that affect me ... sounds selfish I know but I had to make a decision.
I hope a cure is found and Dakota lives until her old age and it is so unfair that innocent children, through no fault of their own are stricken with so many terrible diseases. Have you ever walked through a childrens leukemia ward ... in spit of their illness, most children are happy and playful. The same disease in an adult would not bring the same response it does when we see children suffering from it. In that way I hate the marketing of the disease because the ad execs know that showing a beautiful child will ellicit more of a response.
You did a wonderful thing by sharing this post ADW and I hope that your billions of readers contribute to killing this terrible disease.
Sorry for being so down about being unable to contribute to your tay-sachs cause
Claudia - thanks, right back atcha!
Marky - thanks for your help!!!
SleepyNita - the video had me crying and I don't do that lightly.
Betty - Great, now people will think I'm all nice and shit.
Jenn - Stalk away!
George - I totally understand where you are coming from and I don't expect ANYONE to contribute anything. In fact, the only thing I am asking is that you all go and watch the video and be educated. People, mistakenly, assume that Tay-Sachs only affects certain types of people, especially Ashkenazi Jews and that isn't the case. If more people knew what to look for, then maybe the disease could be diagnosed sooner allow for more effective treatments.
I appreciate EVERYONE's input and please do not let me make you feel bad. That was not my intention. AT ALL. Just go watch Dakota's video and keep her and her family in your thoughts, prayers, et cetera.
Love,
ADW
yeah, now i think you're all nice and shit....
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