Leukemia - Ana Lucia
For the Nurture section of the different charities, I had wanted to support a charity that supported or funded Leukemia or Leukemia research. This is because my niece was diagnosed with Leukemia 3 years ago. She is doing great now, but I still wanted to make one of the charities related to Leukemia.
I had travelled and lived in Guatemala some years back and had met a number of wonderful people from there, the US and Canada. Recently, a friend from San Francisco that I had met in Guatemala told me about this young girl who is the daughter of her friend from Guatemala. This is her story from (Giselle Shardlow).
The story of Ana Lucia Toj:
- Ana Lucia was diagnosed with Leukemia in 2000.
- She was treated in a Guatemalan hospital for a couple of years until they could no longer help her. Treatment meant traveling one hour on the bus to wait in line with other children at the Unidad Nacional de Oncologia Pediatrica, sometimes up to 6 hours and often times they would run out of medicine. She lost her hair in the process.
- In 2002 she flew to NIH in Maryland to receive "exploratory medicine". The hospital only treats children as their final option if there is no other help from their local hospital. Cost is free but medicine is 'new' so not firmly tested and patients act as 'testers’.
- The bone marrow (from her brother David) treatment fixed the Leukemia but she had a severe reaction to the transplant. She has had problems with her lungs, eyes and mouth ever since. She is supposed to visit hospital every 6 months, but they negotiated every year so they could save up for the plane tickets. For children who live in America, the hospital pays for their plane tickets but not for families out of the states.
- While Ana Lucia and Victor are at the Children's Inn, they only have to pay for their food. The accommodation is free. They often don’t have enough money for food and warm clothing.
- Ana Lucia is only one of 10 children who survived the bone marrow transplant from 2002.
- Her nickname at the hospital is "El Milagro" - the miracle - she continues to fight for her life
- Up until 2009, she only got around with a wheelchair which was difficult in the cobble stone streets of Antigua.
- Her mother and father have trouble working because Ana Lucia needs constant attention. We were hoping to support Victor in providing Spanish Classes online via Skype from home, but to date he is having difficulties getting internet connection to his house in Santa Ana. That way he could be more financially self sufficient.
- They have to return to NIH in Maryland every year for treatment, usually in October depending on when they can gather funds for flights and organize visas.
- Her physical appearance has been affected from the 8 years of treatment – her face is swollen from the infections in her mouth and eyes, her height has been stunted due to the steroids and she is unable to exercise regularly due to her weak lungs.
- Throughout the whole journey, she remains a positive and charismatic young woman with a fighting spirit.
Why Family Toj needs money:
- When Victor first told me in 2000 that Ana Lucia was diagnosed with Leukemia, he said that “in Guatemala, Leukemia makes the rich poor and the poor die”. I vowed in that moment to do what I could financially to support their family.
- Victor has been unable to work properly since 2002 when they left to Maryland. He has had to stay near the house to support Ana Lucia. Many of the Spanish Teachers in Antigua don’t have work due to the lack of tourists. They are still being paid the same poor wages as 10 years ago.
- Ana Lucia and Victor travel to Maryland every fall to continue Ana Lucia’s treatment. She has just turned 15 years old and there is hope that she will remain alive with consistent treatment. She is an inspiration to the people of her village in Santa Ana and for the children who attend NIH.
- The immediate funds would go to flight tickets from Guatemala to Maryland for Victor and Ana Lucia. They also need funds for money and clothes during their stay.
- Longer term we want to support Victor to start up his own online Spanish Classes. We bought him a laptop in December but he needs funds to get internet connection at his home.
Here at S2S Nation we will try to help support Ana Lucia and her family and we hope that Ana Lucia will continue to fight and live a long life.