A Young Girl, A Rare Disease, & The Compassion Of Strangers: Hillary & Bill

[orleans]

i found this story to be rather moving--and i just wanted to share it here.

a man from wisconsin called the ed schultz show on wednesday. he said his 11 year old daughter had suffered from a very rare disease of which there is no cure. he had contacted hillary, obama and edwards--long before july of 2007 from what i understood.

he thought, for sure, he would hear back from john edwards because (as he said) edwards had lost a child. but he didn't hear from him. and he didn't hear from barack.

he heard from hillary. and bill. he said that hillary corresponded with his daughter, and that his daughter was thrilled when she received a card from bill. he said hillary checked in every month to see how his daughter was. he felt that hillary genuinely cared. "my heart is with hillary."

he said the correspondence with the clintons meant so much to his daughter that they buried her with it.

he also said they are losing their house now due to the medical bills.

it was a very moving story. ed schultz commented that people don't really see this side of hillary; that this man's story, relating to his daughter, humanizes hillary and demonstrates her compassion for people, and her concern.

he also said that the day his daughter died his congressional rep. tammy baldwin and his wife spent two hours on the phone, talking and crying.


so i googled.

her name is dyan marie orr
http://www.dyanmarieorr.com/
she was born april 16, 1996
dyan was diagnosed in 2005 with a lymphatic disorder and Gorham's Vanishing Bones Disease

mike orr, dyan's father (the man who called ed schultz), recently dropped out from a local assembly race
http://www.wiscnews.com/pdr/news/270916

from july 2007:

To her last breath, Dyan Orr fought for life.

"She's the toughest person I ever met," her dad Mike said just a few hours after her death. "She handled more pain than any human should have to."

The die-hard Notre Dame fan lost her battle with a rare disease Wednesday afternoon. She was 11 years old.

Funeral Services will be held Monday in Portage, Wisconsin. The Burial will be on Tuesday.

Only 200 people have ever been diagnosed with her condition in the United States.

She suffered from a lymphatic disorder and Gorham's Vanishing Bones Disease. The lymphatic disorder damaged her lungs while the Gorham's Disease ate away at her bones. By the end, nearly every organ in her body was affected.

"We are happy that she is no longer suffering and that she is pain free," Mike explained. "She is with my parents now. She has friends and company. I'm sure she is happy."

Dyan is from Portage, Wisconsin, but her father Mike grew up in South Bend. Because of that, she developed a fond appreciation of the Irish football team.

Her favorite player was Brady Quinn. When he heard about Dyan's condition a few months ago, he called her on the phone.

Dyan considered that phone call the greatest moment of her life.

Dyan would later send a photo of herself wearing a shirt with Brady Quinn's face on it to Brady. He autographed it and sent it back.

When the photo arrived, Dyan had one of her best days in weeks.

Just a few hours before she died Wednesday, her parents took her out of her hospital room and brought her to the gift shop. That's where she saw a familiar face.

"She saw Brady's picture on the Men's Health Magazine and that busted those little bright eyes open," Mike said with a tone of joy and sorrow.

Her dad and mom, Tonya, bought her the magazine.

"She just looked at him with adoring eyes just like she had looked at the picture he had signed for her," Mike explained.

Another one of Dyan's Irish favorites was Charlie Weis.

The Notre Dame head coach also called Dyan last month.

When the conversation was coming to a close, Dyan was sure to ask Weis how Hannah was doing. Hannah is Charlie's daughter who also suffers from a serious medical condition.

Dyan's body remains at the University of Wisconsin.

Before she died, she agreed to donate her body to medical research in the hopes of finding a cure for her rare disease.

Doctors will take a number of samples from Dyan's body in order to begin research immediately. They are able to test on every part of her body except her eyes.

Dyan asked for her eyes not to be touched so that she could see in heaven.

The family will hold visitations on Monday from 10AM to 1PM at Bethlehem Lutheran Church in Portage, Wisconsin. Funeral Services will follow.

A second visitation will be held on Tuesday morning at Schuette-Daniels Funeral home from 9AM to Noon in Burlington. The Burial will follow at St. Charles Cemetary, also in Burlington.
http://www.wndu.com/news/headlines/8442067.html#comments

from what i can tell, there really is no publicity about hillary's interest in this young girl, it appears to have been a private and personal correspondence--i can only find a comment on an opinion page the father posted january 31, 2008:

"Clinton touched our family. When she learned of the disease that struck our daughter Dyan, she didn't hesitate to contact me. I never heard from the other candidates and when I contacted Oprah her people said I need to get 1,000 signatures to even be considered, and she endorsed Obama. This shows me how Hillary cares for everyone. Dyan passed in July from the effects from Lymphangiomatosis, but I know she was so proud that Clinton took the time to care. Google Dyan Orr to learn about her. I believe a vote for Hilary is a vote for us."
http://www.theithacajournal.com/apps/pbcs.dll/article?AID=/20080131/OPINION03/801310313/-1/ELECTION


dyan, lower left

NBC 15 first met Dyan in February, when she was still up and about. It was then she told us of her plan to let doctors use her body for research.

"They'll know more what's happened, because they'll do tests on me. They might know more," said Dyan on February 4, 2007.

"She's doing this on her own," says Tonya. "It's amazing to us that she is that giving and knows the importance of it," she adds.

Tonya says Dyan has made one request.

"She (the doctor) can take whatever she wants from her, but not her eyes because she wants to see in heaven," Tonya says.

"I think it will be just like down here (heaven) except full of clouds," Dyan told NBC 15 in February.
http://www.nbc15.com/home/headlines/7617141.html

http://www.nbc15.com/home/headlines/7617141.html

The Dyan Orr Foundation is located at 134 West Cook Street in Portage.

how difficult is it to take the time, even a moment, to show you care, to take an interest, to express your concern when someone reaches out to you on behalf of their child who is dying?

i would be interested in hearing more details of this story, and i wish i could hear the show again--i'd type up a transcript. as it was, i was driving when i heard this man calling the show. even so, i found it very touching.

[DFW]

1. I don't know Obama well enough to speculate on how he might have reacted

But from what I know of Bill and Hillary, this really is typical
of them. If Hillary wanted better numbers up to now, she should
have spent more time showing this side of her. In the informative
post by TwoSparkles, it seems plain that she had poor advice from
the beginning. The best thing to assume in a presidential campaign
is to assume that any preconceived notions you may have need to be
challenged internally, lest they turn out to be wrong.

[fed-up]

2. looks like she didn't help much-"they are losing their house now due to the medical bills"

I am sure candidates get a few zillion requests for help. How many others did Hilary get that she (her staff most likely) did not reply to?

One feel good story, where the family is still scr*wed because of medical bills
whoop-di-do

[Snotcicles]

5. wow. nt

[Apollo11]

6. The point of this story is not about money

Although I think it is relevant that Hillary is fighting for UNIVERSAL Healthcare that will cover EVERY American.

It tells us that Hillary runs a tight ship. Her staff know that they must not put these kind of letters in the shredder.

Not like Obama's office.

[BlackVelvet04]

7. And if they had the insurance through the

FEHBP that Hillary's plan offers they wouldn't be losing their house.

[DURHAM D]

10. There is something broken in you. n/t

[fed-up]

21. you're right-I'm sick of all talk, no action-watch Sicko-how is Hilary helping them keep

their house

our health care system is in shambles and this family is not the only one to lose everything due to illness

I lost two family members last year due to no health care-if Hilary hadn't caved they might be ALIVE


yes, something is broken and that is my heart

[orleans]

12. like i said:

how difficult is it to take the time, even a moment, to show you care, to take an interest, to express your concern when someone reaches out to you on behalf of their child who is dying?

apparently for some people--it is very difficult.
and for others, it is difficult to appreciate.

for others, sensitivity is sorely lacking.

[Marrah_G]

14. What a complete asshat response-

I would loved to say more but it would end up deleted.

I will say that is one of the more disgusting comments I have seen on DU in a while.

[murbley40]

17. Wow!

Hate is a terrible thing, I feel sorry for you, could not even give a small amount of credit to another human being for being kind to a young dying child. You are pitiful! If this had been about Obama,oh that's right he did not respond, but if he had, you would be singing a much different tune.

[jasmine621]

24. Typical Obama supporter.

Since Obama was contacted, it's obvious what his response "would have been."

[bigtree]

3. what a wonderful story

thanks for posting

[bigtree]

4. so, share YOUR story

about the altruism of yourself or your candidate.

[UALRBSofL]

8. Not just because I'm a Hillary supporter

But when I lived in Arkansas while Bill was governor Hillary was very involved in the Arkansas Children's Hospital. They helped raise money for the hospital and from what I've read it's the 7th largest children's hospital in the country. Yes, it's a hospital in Arkansas and you would think it wouldn't be that significant because of where it's located but it's huge. They raised money for a cancer research center, much of it from Sam Walton. My point is healthcare is probably Hillary's biggest issue and that's why over the years she has been pushing for Universal Healthcare.

[SaveOurDemocracy]

9. Thank you for taking the time to confirm the story...

There would have been squawks that it was a HRC operative ... a plant to make people think she could be human.

[Raffi Ella]

11. Hillary truly cares about children,

she's worked her entire adult life for better quality of life for all.Her Universal Health care plan is something she will passionately fight for and has fought for in the past.

I don't understand how,on a Democratic Forum,this woman could be ripped to shreds the way she is.THIS story speaks volumes about her!THIS is what she is all about.I wish people could see past the lore and propaganda about her just for one day and see her for the truly caring and wonderful person she is.

[Straight Shooter]

13. A lesson in irony: Hillary works to help epileptics; Axelrod's daughter has epilepsy.

"Today, as Axelrod basks in his profession’s highest glory — shaping a historical presidential campaign — he is experiencing one of its nastiest turns: in a tiny and ideologically promiscuous world, you often need to go to war with your friends. (If Obama hadn’t run, Axelrod says, he would have sat out this presidential race, and he says he told all of his other former clients that early on; he hasn’t had much interaction with them since.)

There is Dodd, and there is Edwards, but perhaps most poignantly, there is Hillary Clinton. It’s a matter of epilepsy. David and Susan Axelrod have three children in their late teens and early 20s. Their eldest, Lauren, has developmental disabilities associated with chronic epileptic seizures and now lives in a group home in Chicago. But for years her illness required enough of her parents’ time that it kept Susan Axelrod out of the work force and kept David from moving to Little Rock during the 1992 presidential campaign. Susan and two other mothers of children with epilepsy started a foundation, Citizens United for Research in Epilepsy (CURE), which Susan runs, to promote research and raise funds for a cure.

Because of David’s political work, they have had political celebrities do fund-raisers: Bill Clinton, Tim Russert, Obama. But few have done as much for the foundation as Hillary Clinton."

http://tinyurl.com/ywhle6


"On screen, a baby waves her arms and gurgles happily, then tenses, scrunches her eyes shut, and clutches her tiny fingers together. Her arm jerks to one side, stiffens, and finally relaxes. She cries. Then the shaking starts again.

"I just wanted to hold her," says Susan Axelrod, her voice intense as she recalls the film shown at a recent conference on epilepsy. "I always held my daughter when she was having seizures."

Axelrod raised a child with uncontrollable epilepsy and felt frustration with doctors who saw partial control of seizures and serious drug side effects as acceptable outcomes of their treatments. Her experience led her to found an organization called Citizens United for Research in Epilepsy in September 1998. The Chicago-based group enlisted Hillary Rodham Clinton's help and focused congressional attention, and new funding, on research aimed at a cure for epilepsy. ..."

http://www.sciencenews.org/articles/20000603/bob10.asp

Why did they specifically enlist Hillary Clinton? Because of her reputation for caring about children.

[OzarkDem]

15. Interesting, very interesting

Yet he chooses to support a candidate who has an inferior health care reform plan. Politics always makes for strange bedfellows, but this doesn't make any sense.

The only possible explanation is the gender issue. I know it makes Dem men as uncomfortable as heck to deal with it, but its there. Dems want Hillary to help them raise money for a sick child, help them get a bill passed, etc. But they don't want a woman leading the country.

They don't want a woman as their boss.

[Straight Shooter]

16. I think Axelrod is being his political self, backing what he perceives to be a winner.

But it goes to show that behind the scenes, there are strong relationships that most of us are not aware of.

It is also a mark of Hillary's character that she does not bring this subject into the campaign. She respects their privacy.

[DURHAM D]

18. And, if Susan Axelrod called Hillary next year for help again

with a project involving children she would get right on it. Few people who bash her know anything about her character. Their loss.

[OzarkDem]

19. Everyone assumes the role of women leaders

Happy to have them help, but its something different if they want to be in charge of the country. One would think the characteristics that the Axelrod's admire her for should make them want to see her doing the same for everyone in the country.

[DURHAM D]

20. You would think so wouldn't you.

However, insider Chicago politics apparently trumps everything.

[Straight Shooter]

23. Good point. Too bad the MSM is too busy maligning her to bring this into the light. n/t

[jasmine621]

25. This would not be considered news. Only negative stuff about HC is news. nt

[Barack_America]

22. That's a nice story...n/t

[goodgd_yall]

26. Sweet child

It's so hard to see disease ravage a child. god bless her.

When I have seen Hillary in a photo or on TV with children, I see genuine care. Her facade that she has on when debating or giving a speech falls away.

[orleans]

27. when i told my 19 year old daughter this story

she asked me "do you know why hillary is the one who cares the most?"
"why?"
"because she's a mom"

being the single parent that i am, and the personal circumstances that have woven their way through our lives, i looked at her and said "maybe. maybe you're right." i don't know. who knows?