I know that many of you have been following the story of Elizaira from Puerto Rico. I’m sorry to report that she passed away at 6:00 am on Sunday morning, March 1, 2008. She was 29 years old and leaves behind a husband, two beautiful children and a very loving extended family.
Elizaira was amazing.
She first contacted the HPS Network less than a year ago. She was having trouble breathing and didn’t know about HPS or the possible lung complications. Already her pulmonary function tests were quite low.
Elizaira cared for all of us from the very beginning, before she even knew us. It just so happened that the documentary film crew was at the HPS Network office filming the day she called for information ( It was the second time she called ). The film crew asked if they could film Donna speaking to her and doing the initial new person intake, and even though she didn’t even really know us, she opened up her life for our benefit and agreed.
She traveled to the NIH hoping to be admitted to one of the drug trials, but was already too ill. The only option left was a lung transplant.
Elizaira was a fighter. She had a master’s degree in social work and she set about doing whatever she had to do to get her lung transplant. Her family and friends worked hard to help raise the money that would be needed to travel to the mainland United States for the procedure, to live near the transplant center while she waited etc.
Lung transplants are not available in Puerto Rico. Elizaira’s insurance was Medicaid and it wouldn’t cover any procedures off the island. But Elizaira didn’t give up. She persuaded the Puerto Rican government to give her a $350,000 grant towards the expenses of the surgery – the first such grant to be given to an HPS’er. Piece by piece the finances came together.
The film crew was able to visit Elizaira at her home in Puerto Rico and interview her as well as her family. She traveled an hour away from home in a wheel chair and on oxygen to briefly attend the HPS Family Conference in Puerto Rico in September. There, she received a standing salute in support of her quest for new lungs.
Elizaira was so brave. She left her two young children behind in Puerto Rico with her mother - not knowing what the outcome would be – and came to Fairfax, Va. with her husband to wait for her new lungs.
She fought so hard every step of the way. But Sunday she just couldn’t fight anymore. Now, she’s at peace with God.
She’s allowed the NIH to take whatever tissue samples they need to benefit research. An autopsy is being done this week at NIH and then her body will be flown back to Puerto Rico.
Elizaira was a trail blazer. She was a brave fighter in our battle for the cure. She touched us all.
Elizaira was amazing.
She first contacted the HPS Network less than a year ago. She was having trouble breathing and didn’t know about HPS or the possible lung complications. Already her pulmonary function tests were quite low.
Elizaira cared for all of us from the very beginning, before she even knew us. It just so happened that the documentary film crew was at the HPS Network office filming the day she called for information ( It was the second time she called ). The film crew asked if they could film Donna speaking to her and doing the initial new person intake, and even though she didn’t even really know us, she opened up her life for our benefit and agreed.
She traveled to the NIH hoping to be admitted to one of the drug trials, but was already too ill. The only option left was a lung transplant.
Elizaira was a fighter. She had a master’s degree in social work and she set about doing whatever she had to do to get her lung transplant. Her family and friends worked hard to help raise the money that would be needed to travel to the mainland United States for the procedure, to live near the transplant center while she waited etc.
Lung transplants are not available in Puerto Rico. Elizaira’s insurance was Medicaid and it wouldn’t cover any procedures off the island. But Elizaira didn’t give up. She persuaded the Puerto Rican government to give her a $350,000 grant towards the expenses of the surgery – the first such grant to be given to an HPS’er. Piece by piece the finances came together.
The film crew was able to visit Elizaira at her home in Puerto Rico and interview her as well as her family. She traveled an hour away from home in a wheel chair and on oxygen to briefly attend the HPS Family Conference in Puerto Rico in September. There, she received a standing salute in support of her quest for new lungs.
Elizaira was so brave. She left her two young children behind in Puerto Rico with her mother - not knowing what the outcome would be – and came to Fairfax, Va. with her husband to wait for her new lungs.
She fought so hard every step of the way. But Sunday she just couldn’t fight anymore. Now, she’s at peace with God.
She’s allowed the NIH to take whatever tissue samples they need to benefit research. An autopsy is being done this week at NIH and then her body will be flown back to Puerto Rico.
Elizaira was a trail blazer. She was a brave fighter in our battle for the cure. She touched us all.
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