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

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Eduardo goes home a hero Ticker Tape Parade!

11 year old boy with rare disease, Hemophagocytic Lymphohistiocytosis also known as HLH syndrome, has fought for his life against all odds.

A few days ago they finally wheeled him out of the hospital.

They removed his lower colon and he has a colostomy bag.

During his more than a month in the hospital there were three desperate nights in which the doctors said it would take a miracle if he were with us in the morning. Miracles happen in threes!

His ordeal may not be over. According to a US national specialists, HLH syndrome patients only have 20% chance using the limited drug therapy which was available to a poor family in a poor country. Orphan diseases like hlh are difficult to fight because they are rare and there are not many specialists who study these kinds of childhood illnesses.

Guarded news for Eduardo

Mexico's son is out of the hospital and back in his

childhood home of Villa Union Duranago.

Bien Venido Pelito!

Eduardo, he likes to be called "Pelito", was in the hospital for over a month. He was diagnosed with hlh syndrome, an illness that is nearly always fatal if not treated within 2 months.

Eduardo went through multiple operations trying to stop the hemorrhaging of blood. Eduardo's lower intestine was removed, bit by bit, operation by operation. He now has a colostomy bag in his side. That is a tough nut to crack for an 11 year old.

"How do you feel about being home?"
the questions flowed.



"Fine," Pelito replied.

The smile on his face told the whole story. Eduardo was going home.

Going home was complicated. The people of Villa Union, Durango, Mexico, know all about Eduardo Salazar. They showed up at the Salazar rivera home in throngs. There was a parade of sorts, all for a brave little boy who may be Mexico's next great soccer star.

The brothers and sisters painted Pelito's room. It was the best gift they could give this great brother ! To top it all off, brothers and sisters put a big Bien Vendio sign in Pelitos room to make it look bright.

There were smiles on every face, tios, cunados, vecinos, hermanos y hermanas of course, friends from school...Eduardo was finally home, something they said would not happen.

Eduardo comes from a poor family. With 7 children, Marisela, Maritela, Jain, Miguel Angel, Mariela, and Jaime, it is difficult to give material things to them. Today, Eduardo had about every toy an 11 year old could want! There were more toys than he and all of his brothers and sisters combined had gotten in their lifetimes!

Eduardo was happy to see some of his brothers and sisters play with some of the toys. He is very weak and could not play with most of them!

Then there are plenty of flowers for all of the family to enjoy!

Finally, the line into the Salazar Rivera home was too long. Eduardo was so tired. His wishes were respected and the party went somewhere else.

Mom and dad and the family are thrilled to have their child home. It is as though Dios had given them a miracle. There are big smiles of wonderment, relief, a sense that a light at the end of the tunnel has been seen.

What they don't know is that HLH is like a wolf in the night, waiting to strike it's victim.

The US expert I spoke to said the chances of recuperation with Gama Globulin alone were slim. Eduardo would do better for awhile... and then .... without a bone marrow transplant and chemotherapy the blood in Eduardo's system may pull him down again.

Today, we thank God for what we have. All of the neighbors want to thank God, too. Each wants to take Pelito to their own respective churches so they may thank God in their own way for this bundle of miracle in front of them!

Pelito just smiles, but the smile is one of strength and defiance. He has beat the odds, he knows he will pull through and we beleive in him.

The cost of medical care in Mexico is high and there is a question about the quality. We are still seeking donations to bring Eduardo here so he may take

advantage of one of the few clinics in the US.

Short of that, the Salazar Rivera's want him to have the best medical care thy can in Mexico.

Our appeal to Piolin Por La manana and Univivion was a complete flop. Perhaps they have something against me personally. That would be a tragedy, to put personality in front of the well being of a child.

Maybe we did not catch their eye, although I sent the Piolin station manager several notes. These people have immense power, prestige, imagine the number of people who are trying to get something from them for their own personal gain. All we are trying to do is help save Eduardo.

If Eduard Sotelo will not help us perhaps we can appeal to the competition. This remains a compelling story about an innocent boy who wants to be a soccer star and got held up by an ugly illness called HLH Syndrome. This is a story about how a forgotten city in Mexico pulled together to help one of their own.

God bless the Salazar Rivera family. God bless Eduardo Salazar Rivera. God bless all of those who helped him in his fight for life. God bless those few who turned their back, for we are all children of God. God bless you, and if you have a little boy or a little girl who is fighting a potentially fatal disease, God bless your young one. Out thoughts and prayers are with you.

Dios te bendiga,

Uncle Tim

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?"

Child fights for his life in Durango hospital

Eduardo Fights For Life

Frantic family celebrates the gifts god gave them


We did not hear anything from the Salazar family for the past several days.

Finally we made contact with Maria Salazar Rivera today. This is a mixed blessing. We were relived to hear Eduardo is still with us. We must all celebrate the gifts god gave us. The other part of the good news is this little child is doing slightly better.

The bad news? This budding soccer star has been through more operations in an attempt to stop hemorrhaging. One must wonder how much a little boy can take.

Maria was on the run, getting ready for a trip back to the hospital where she could be by her child's side. We know it has been a terrible struggle for her, taking care of 6 other children and Eduardo, too!

We express our disappointment the Latino radio and TV stations ignored this 11 year old boy in his time of need. Does any one care what happens to those living South of the border?

That especially applies to Eduardo Sotelo, who I though would run with this story. He is such a compassionate person ln the radio, and even though my time with him on the Piolin Caravan to Washington D.C. was short, I thought he was a good soul. Geez, I still think so!

God has a different plan. If you are one of those who cannot use the "G" word, then stick the word destiny in the phrase. Eduardo has his destiny. Maybe it is not what we wanted for him. We have resigned ourselves Eduardo will not get the medical treatment he needs, and the established media outlets were no help at all.

Please keep your hearts and prayers open for Eduardo. We are still seeking donations of cash or things to sell on eBay. Having a sick child is a very costly disaster which hit the Salazar family hard.

Mail Cash to:
Tim Paynter
Attorney Trust Account
120 South Kalamath
Denver, Co., 80223

Mail Things to:
Tim Paynter
Building A
120 South Kalamath St.,
Denver, CO., 80223

Every penny helps. We may not be able to save all sick children, let's start with Eduardo!




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Deadly Illness Strikes After Mono, Epstein Barr

Have you or your child had Mono? Epstein Barr? Herpes? Watch for sores on your body which may indicate you have been infected with HLH. If left untreated the illness is usually fatal within 2 months!

Hemophagocytic lymphohistiocytosis, or HLH, presents with persistent fever and paleness. There can be jaundice and neurological symptoms, such as irritability. If you or your child have these symptoms then seek treatment immediately. The sooner the illness is diagnosed the better the survival chances.

Young Eduardo Salazar has been infected with this ugly disease. You can read about his fight at the following address:

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

HLH mostly infects children and is an autoimmune disease. There is a treatment for it called the 2004 treatment protocol, which has been successful in cases brought on by secondary infection like Mono, herpes or Epstein Barr. Those who acquire the illness through heredity have a significantly reduced chance of long term survival.

More information about HLH can be found here:

http://www.cdc.gov/ncidod/eid/vol6no6/fisman.htm

While HLH is rare, it is an illness that requires vigilance. If you suspect you have symptoms don't delay in seeing your doctor!

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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

11 Year Old Needs Money For Medical Care, Rare Disease, HLH Syndrome Attacks

Eduardo Sleeps...

Sometimes all we have left is prayer

Join Us In This Story of Hope

For A Child Fighting A Rare Disease

December 05, 2009

In life there is always hope. We finally heard from the Salazar Rivera family who are watching over their son, Eduardo in El Hospital General de Durango, Mx..

It is hard to imagine how a young boy can fight so hard. Little Eduardo Salazar Rivera is still alive and kicking. He has been through two more tough surgery's as the doctors frantically try to stop his internal hemorrhaging. Eduardo is out of intensive care once again.

The sad truth, until Eduardo is able to get the

best of care his chances are not very good

Eduardo's parents want to move hospitals. They are not convinced their son is making progress where he is. The sad truth, until Eduardo is able to get the best of care his chances are not very good. But God has his plan and we have been praying for Eduardo, that God's plan be done, what ever than may be.

For those just joining our blog, little Eduardo Salazar Rivera is suffering from a rare childhood disease called HLH or Hemophagocytic lymphohistiocytosis. There are two forms, hereditary HLH and HLH acquired through secondary infection, or SHLH.

Those who acquire the illness through heredity have a poor prognosis even if they can they can force the illness into remission. Those who acquire the illness through infection, as appears to be the case for Eduardo, have up to a 70% of recovery with aggressive treatment. Aggressive treatment includes chemotherapy, imunotherapy and a bone marrow transplant.

We appreciate cash donations or gifts of

property to be sold on eBay

The family is short funds and appreciate donations, money or property to be sold on eBay. Please send to Tim Paynter, Attorney at Law, 120 South Kalamath St. Denver, CO., 80223. If you have connections to the media we would appreciate your assistance in this desperate call for help.

Sometimes all we have left is the power of prayer. I hope you will keep Eduardo in your prayers, and his family, as we are all children of God. Eduardo could be your nephew, or grandson or the child of someone you know... We can't save every child, very sad if true. We can save Eduardo, and we ask you to be part of it.

Uncle Tim

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No News, 11 YO Fighting For Life, HLH Syndrome, Childhood Diseases Deadly

For our new followers, Eduardo Salazar Rivera is an 11 year old boy fighting for his life against a childhood disease called HLH Syndrome, or Hemophagocytic lymphohistiocytosis. This disease is a rare illness difficult to diagnose. It strikes mostly children. Those who acquire it through infection, as Eduardo apparently has, have a 70% chance of recovery if they get the right treatment protocol. Those who do not get appropriate treatment usually die within 2 months.

Little Eduardo has been through hell. Last we heard he had suffered hemorrhaging and he lost over a pint of blood. There was the night of miracles in which the doctors said it would take one for him to pull through. He did. He now has a colostomy with a significant portion of his bowel removed.

Little Eduardo has been through hell

We hope no news is good news. The family has been in crisis, and we have been praying for God's will. We have also been fund raising as the treatment for HLH is very expensive. Sad to say, Eduardo is not in the ranks of the lucky ones to receive the chemotherapy and bone marrow transplant that he likely needs. He still has a chance.

After all of that depressing news, let me give you something positive. Now is your chance to make a difference in this young man's life. We need donations of any amount. We are also accepting items to sell on eBay. Everyone has something they don't want.

let me give you something positive

Please help little Eduardo as if he were your own nephew or grandson. We are all children of God. We can't save every child with a rare illness, not yet at least. But we can save Eduardo.

Please send donations of money or things to be sold on eBay to:

Tim Paynter,
Attorney at Law
120 South Kalamath St.
Denver, CO., 80223

If you include your email we will tell you when your item comes up for sale, if you send items. That way you can see what the item sells for and be part of the Salazar Rivera family.

If you have a little one suffering from illness, please write and leave comments. Every child has the right to live. Let's celebrate our lives together and share in the wonders that we have been given.


Thanks you thank you thank you,


Dios Te Bendiga,


Tim Paynter


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Resting, Peaceful, Hopeful, Where R U? Childrens Diseases, Charity

What do you do when your child has a likely terminal illness? What do you do when the research options are limited? What do you do when the medical diagnosis for a young boy is poor, a child who has yet to live much life falls gravely ill? What can you do for a mom or dad lost in their grief, in their own sense of powerlessness, thier desire to give everything...but who don't have what is needed, money, power, respect to help their son?

The Salazar Rivera family has done what they can. I hope they are proud. As friends of the family we appealed for public support. Our plan was to bring this young son of Mexico to St. Jude's Hospital where no child is refused. Our plans have gone awry.

Our appeal to Latin America radio stations for help, our appeal to Univision and people with power have gone unheard. The plight of a poor boy from Villa Union Durango Mexico has been lost on a world interested in more important things...money, prestigue, a realization not everyone can be helped, so why help anyone? Why help Eduardo?

Do I sound bitter? Frustrated? Angry=afraid? Probably all of these apply. I can only imagine how a mother and father crying for their young son must feel...

But we have some things to be grateful for. Eduardo has come out of his coma. After surviving the night of hell, the night they said it would take a miracle to survive, he is still with us. They removed a large portion of his intestine. As I understand it, he has a colostomy. He is finally taking in nutrients which were so desperately needed.

The experts I talked to tell me this a stop-gap. If Eduardo is to survive he needs chemotherapy, he may need a bone marrow transplant, and he will certainly need extended hospital care to guard against infection. Most of this he can best find in the US. Alas, the US public has been unwilling to hear Eduardo's story. I am not going to make an appeal for help, donations, things to sell on ebay. All I ask now, for those few who stumble upon this blog, is your prayers.

I will keep you posted as to how Edaurdo is doing. I would love to hear about your personal struggles, your points of view, what worked and did not. I would love to hear about how you feel if your child is suffering too. In unity we find serenity, even when it does not comport with our wishes.


Uncle Tim

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