Showing posts with label orphan diseases. Show all posts
Showing posts with label orphan diseases. Show all posts

Thursday, March 4, 2010

Eduardo clings to life, intubated, a real fighter against orphan childhood diseases

Eduardo clings to life
It wasn't supposed to be this way
I have not been staying in contact with my Salazar family contact the way I should. It is pretty clear to me, the news is not good. Sometimes it is better to not broach the topic than to bring a flood of pain and sorrow into one's heart.
Eduardo has been battling for his life. He is one tough kid! He has been intubated, if I understand the Spanish explanation. He has been rushed to the hospital. He has suffered like no child should ever suffer.
The Salazar family has given up their dream of getting Eduardo modern medical care. They were never convinced there was anything to modern medicine anyway. They still fight to feed the kids, pay the bills and take care of a very sick child.
Hence, we continue asking for donations for the family. They are noble, maybe too proud to speak out for themselves. Those who have been care takers know, it takes a lot of money to take care of the sick person. Meanwhile, the brothers and sisters take back seat. There is never enough when you make less than $400 a month.
Please send donations to:
Tim Paynter
Attorney at Law
120 South Kalamath St.
Denver, CO. 80223
The problems Blake Robbins is facing, and the problems of Pensylvania school spycams in the LMSD community, pales in comparason to this kid's problems. It puts it all in perspective. It is still an interesting story, http://lawmancolo.blogspot.com/2010/03/lmsd-folding-tent-computer-web-cam-in.html








Custom Search



Subscribe in a reader



Saturday, January 2, 2010

Guarded improvement Happy New Year

Eduardo beats odds

Child with Hemophagocytic lymphohistiocytosis
(HLH syndrome) survives
I spoke to a representative for the Salazar family yesterday. Eduardo is recovering from a childhood disease called Hemophagocytic lymphohistiocytosis *HLH Syndrome*. Most children are lucky to make it two months with out almost immediate treatment. Eduardo's treatment was slow to come, but he is still with us.
I was very relieved to hear that Eduardo is stable. He may even be doing better. They put him through the ringer in El Hospital General in Durango, Mexico. A good portion of his bowel has been removed in a desperate attempt to stop hemorrhaging. This little 12 year old fought with everything he had. Maybe he will be a soccer star after all!
Family and friends are gathered 'round. Gratitude is huge, a belief and tremendous faith has left the Salazar-Rivera family with their young Eduardo. There is also the issue of herbal medicine. Maria Salazar Rivera is working with the doctors in coordinating traditional herbal medicine with modern pharmaceutical treatments when the Mexican health care system can scare them up.
The Salazars still need your help and support. They are struggling under a tremendous burden of taking care of a very sick child and keeping food on the table for brothers and sisters. If things do not change, some of the brothers and sisters will likely go hungry from time to time. It is part of life in Villa Union where jobs are scarce and the pay is marginal.
We remain disappointed we were unable to attract the attention of the Latino press on this story. The plight of Mexican nationals who live in Mexico is compelling. This is a global world we live in and without each other, we have nothing. Those we help today will likely help us tomorrow. We could not seem to make that case to the Piolin por La Manana group, or to any sponsor for that matter.
One must be grateful for what we have. Tonight, we have Eduardo. It is not enough because this young child of Mexico will need treatment for some time to come. It is not enough because there are a lot of 'Eduardo's' out there who need help. It will never be enough until we can find a way to help those who have been lost and forgotten by a world based upon greed and corruption and power.
Happy new year to all of you who have supported us. Please join our email or hit the site feed and follow us. Don't be afraid to send a donation if you have an extra buck or two. And if you don't, we ask you keep Eduardo in your prayers, just as we keep all who suffer in ours!
Dios te bendiga
Uncle Tim









Wednesday, December 23, 2009

Resting, a little better, family hopeful

We have guarded news tonight from the Salazar Rivera family. As Christmas eve approaches, the family tells me Eduardo is doing a little better! Eduardo has HLH, a rare and often fatal illness which strikes mostly children. The 11 year old has been en Hospital General, Durango, MX for a month. He was discharged a few days ago.


The family is considering their options. Traditional herbal medicine is well known to them, and the complicated medical system of modern doctors is beyond their capabilities. They are working with the modern doctors to be sure none of the herbal remedies conflict with current medications.


Little Eduardo has fought with everything he has. Now, it is in God's hands. We hope them the best, as well as all young children and their families who are facing similar situations.

Dios te bendiga,

Uncle Tim









Custom Search



Subscribe in a reader




Monday, December 14, 2009

We Almost Lost Eduardo Un Hijo con HLH


Child who went through
hell is still with us!


Eduardo battles a rare childhood disease


Family appeals for help



"We almost lost Eduardo Last Tuesday night. This child is fighting with all his heart, and I am sure, those who have been following this story, Eduardo knows you are with him, too." said Tim Paynter, an attorney in Denver, Colorado.



Paynter was talking about Eduardo Salazar Rivera an11 year old child, who contracted a rare disease which strikes mostly children called HLH syndrome. Fortunately, Eduardo has what is known as SHLH, which means the illness came on after or is secondary to an infection, likely the Epstein Barr virus. Victims of HLH usually die within 2 months after onset without medical treatment.

"You can imagine how the parents must feel!"

"HlH is an illness similar to cancer and more specifically like leukemia, but is neither cancer nor leukemia." said Paynter. "They treat it the same way as cancer and leukemia, they us chemotherapy and a bone marrow transplant."



You have to be lucky to get a bone marrow transplant and chemotherapy in Mexico according to Paynter. Eduardo comes from a poor family in sleepy Villa Union, Durango, Mexico. The idea of paying for sophisticated treatment costing in excess of $500,000 is not within the means of a humble family.



"You can imagine how the parents must feel", Paynter noted. "What parent does not grieve when he cannot give his child what he needs. It must be very difficult when that which you cannot give means life or death for the child."



Paynter said the would-be soccer star has had a large portion of his intestine removed.n



"They said the entire intestine was removed" Paynter said. "There is a language barrier, so I am not sure if it was the entire intestine or just the entire upper intestine."


"We needed the help of influential people like Univision, like Piolin Por La Manana"


Friends of the Salazar family were optimistic they could bring Eduardo to one of the few clinics that specialize in HLH in the U.S. Erin Kennedy, from Castle Rock Colorado, also a good friend of the Salazar's, was checking out preparations.

"We could not come up with the money to be able to help Eduardo."



"We needed the help of influential people for that, like Univision, Piolin Por La Manana, that kind of clout." Paynter said.


"It is more than just money. We need muscles to help fast tracking immigration, we kneed an aircraft to get Eduardo to the hospital fast. These are the kind of things wealthy media company's have access to."


"If you don't have cash then send something you don't want!"





"We are praying for this child of Mexico." Erin Kennedy said. "God has his plan for Eduardo. We hope it is for this bright child to remain around for awhile.!"

Paynter and Kennedy are accepting donations of cash and of things to be sold on the Internet.



"If you don't have money then send something you don't want anymore and we will sell it on eBay!" Paynter said.

Cash should be sent to
Tim Paynter
Trust account
Attorney at Law
120 South Kalamath St.
Denver, Co., 80223

Gifts should be sent to
Tim Paynter
Attorney at Law
120 South Kalamath St.
Denver, CO., 80223

"We are not trying to save every child's life, although we would like to. We are trying to save Eduardo. Won't you be a part of it?"











Monday, December 7, 2009

Child Fights Rare Disease, Needs Donations of Cash, Items 2 Sell on eBay



Eduardo Salazar Rivera is fighting Hemophagocytic lymphohistiocytosis, HLH. He needs donations of money and things to sell on eBay. Please send to Tim Paynter, Attorney at Law, 120 South Kalamath St., Denver, Co., 80223.

Feel free to email me.

More information on HLH is at the following URL, Thanks, Tim.

http://www.histio.org/site/c.kiKTL4PQLvF/b.1851483/k.7487/Hemophagocytic_Syndromes.htm

More information on Eduardo:
http://saveeduardo.blogspot.com/2009/12/resting-peaceful-hopeful-where-r-u.html

Thanks, Uncle Tim

Wednesday, November 18, 2009

Good man Sad Man--News From Eduardo-- Piolin Silent


Well.... Eduardo is responding to therapy with the gamma Globlulin. Great! Hooray!

I emailed a specialist in HLH today. She told me gamma globulin is a reprieve. Without intensive therapy there is little chance. They have room in their clinic, but, alas...it is not free.

We are talking $300,000 to $500,000 to save Eduardo's life.


I cried. Then I prayed.

What is more important, my house, or the life of a little boy? Geeez, life can be so unjust.

The pearl in the conversation is the US specialist does not think the symptoms sound like HLH. Wow, that would be a godsend!

Meanwhile, not a single person has responded to our plea for help. Sure enough, we have not gotten a response from Univision or Piolin, or Eduardo Sotelo, or even one single person we did not already know.


I guess I need to get to know more people!


If you are willing to give, here it is: You can send unwanted but nice items for our internet auction or send bucks.

Please mail your item for our auction for Eduardo or a check to:
Tim Paynter
Attorney at Law
120 South Kalamath St.
Denver, CO., 80223
720.951.1700

When people we know hear about Eduardo they immediately reach into their pockets. We don't even have to ask.

Why is it, the poor people give?

Stay tuned if you like what you read.


Why not check out our ads. It is important to support our sponsors...even if they don't give us money we get a blog.

What I don't understand is, Why doesn't America care about a little boy in a far off place called Durango, Mexico?