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.
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
Posts
