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,

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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

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Monday, December 21, 2009

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