Conversations with the Living: The Haitian AIDS Crisis

The official blog of Conversations with the Living

Archive for the ‘HIV’ Category

Kay Angel Suffers a Tragic Loss

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Our hearts go out to the children of Kay Angel Orphanage, and the family and friends of Lia van de Donk who passed away last Wednesday evening June 27th from unknown causes. Her funeral will be tomorrow, Wednesday, July 4th.

We are deeply saddened by the news. Lia was an incredible woman whose work to provide a home and education for children in need and those infected or affected by HIV/AIDS in Jacmel, Haiti is that of an angel on earth.

Thank you Lia for your selfless work. You will be missed.

May the love and support of those who knew Lia help through the days ahead, and the peace that comes from knowing that her incredible work has made a difference in the lives of many children, provide comfort for all who knew her. Her work is eternal, forever true and changeless.

As stated on Kay Angel’s website. “While no one can replace Lia as mother, anchor and advocate to “her” children, the search is on for the rare, right person to step into the role of caretaker,  administrator, construction supervisor, community advocate, manager of visitor and donor relations plus countless other functions.”

Temporary management will be put in place while they search for a successor.

In order for organizations like Kay Angel to continue providing children life saving medication and a loving home, they must be recognized and supported.

If you would like to read more about Lia and Kay Angel Orphanage or donate to the orphanage during this difficult time, please visit their website –http://www.kayangel.org/.

Peace – CWTL

      

The Children of Kay Angel

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If you missed the previous post, Conversations With Kay Angel, please take a moment to read Conversations With the Living’s introductory piece on Kay Angel, which talks about the work Kay Angel is doing for children in need and infected or affected by HIV/AIDS in Haiti.

We are getting to know a little about the children at Kay Angel prior to our upcoming visit, and we are grateful to Lia, the director of the orphanage, for allowing us to share some of what we are learning about the children she lives and works with everyday. All of the information in the post can also be found on Kay Angel’s website – http://kayangel.org/ (or www.weeshuisinhaiti.nl  for Dutch text).

Upon our return to Haiti, the process of meeting the children and telling their story will also give us the opportunity to meet the individuals that contribute to providing the necessary shelter, medication, housing, education and support that gives these children the opportunity to be happy and healthy.

A Day at Kay Angel

Every school day, the children wake at 5.30am to prepare for the day ahead. After bathing, getting dressed for school, and eating breakfast, one of the two nannies administer the anti-retroviral (ARV) medication, which is pre-measured by Lia before being given to the HIV-positive children. The children receive the ARV medication twice daily, and it is very important that it is taken exactly twelve hours apart with food, in order to be affective.

At 6:35am, Lia, her husband or Frantz, the orphanage manager, drive the children to SOS Enfants for the school day, where they study reading, writing, arithmetic, French, Haitian Kreyol, and the arts. Three mornings a week, at 8.30AM, they drive Martin, who is accompanied by one of the nannies due to his severe handicapped (Cerebral Palsy, autistic, microcephelia), to Pazapa, a school for handicapped children, where he receives physiotherapy.

The children are released from school between 11:30am and 1pm, depending on if they attend preschool or elementary school. The older three girls, Youseline, Melinda and Estania (who you will meet shortly) have the opportunity to participate in a dance class after school, twice a week. The older girls all love school, enjoy photography and are very loving and helpful with the younger children.

When the children arrive home from school they have lunch, do their homework assignments, play games, and are administered their medication with dinner, which is served at 6 PM.

If the children need assistance with their homework assignments, Lia, her husband, or one of the nannies with offer help. The children enjoy playing several games, like marry-go-round, where one of the kids will dance in the middle, and Legos, which they received from a Dutch Santa last year. The children also enjoy singing Haitian songs together, while paying musical chairs, using modeling clay, drawing, playing with the dogs, and playing in the front yard with the play tires.

When there is time for additional extracurricular activities, the children enjoy going to the beach, swimming in the sea, and playing in the sand. Sometimes they will even drive up to the mountains and go hiking with Lia. They take cultural, educational day trips to places like Fort Jacques in Kenskoff, and visit family members of the children that they have been able to maintain contact with.

Meet the Children

Youseline

 10 Years Old                                                                        September 13th, 2007. 6 Years Old.                                                                                                                                                                    

Photos Courtesy of Lia van de Donk

Youseline was born on June 3rd, 2001 in Carrefour, Port au Prince, and raised in Jean Rabel, Lavallee de Jacmel, an area in the mountains above Jacmel. She was raised partly by her mother and partly by her mother’s parents.

When Youseline was 5 years old her mother died of AIDS. Her father had previously passed away from unknown reasons; therefore she was left in the care of her grandparents (her mother’s parents) in the mountains of Lavallée. Unable to continue caring for her, Youseline’s grandparents placed her in the care of Sisters of Charity in Jacmel.  At that time Youseline was very sick and on her way to having AIDS.

Through the CDV/AIDS program at the Hospital St. Michel, Youseline came to Kay Angel on September 13th, 2007 at the age of 6, and became the first child at Kay Angel.

When Youseline arrived she had several sores on her skin and her immune system was very weak.  After completing the last three weeks of tuberculosis treatment, she was immediately enrolled in the AIDS program at Hopital St Michel, where they put her on ARV meds. Within two to three weeks she was already making progress; her skin cleared up, and the sores in and around her mouth disappeared.

Youseline had never attended school, did not know colors, and could not count, read or write. After being home schooled for two and a half years, to bring her up to speed, she began attending second grade, and is now first in her class. She loves school, enjoys learning, and is very smart.

Youseline is a very happy child, loves to sing and dance, and is very social. She has a great laugh and laughs all the time. She feels she is the big sister to the other eleven children

Melinda

9 Years Old                                                                                       Melinda, January 2008

                        

Photos Courtesy of Lia van de Donk

Like Youseline, Melinda’s mother was HIV-positive and passed away as a result of the virus when Melinda was very young. To make her circumstances even more challenging, Melinda’s father, who had a wandering eye, was unwilling to be tested, insisting it was only Melinda’s mother who had the virus.  These decisions led him to no longer play an active role in Melinda’s life.

Although Melinda’s grandmother made every effort to care for her, she was not able to provide the resources, and Melinda was placed in the care of the Sisters of Charity in Jacmel. After only three months she was sent back to live with her grandmother in Zoranje, northeast of Jacmel.  At that time, Melinda was five and a half years old and Kay Angel was contacted to help provide additional resources.

On December 10, 2007 Melinda was welcomed into Kay Angel. When she arrived, she had molluscum, which is a skin infection, all over her body, but she was immediately put on ARV medication and her skin cleared up quickly.

Melinda had never attended school and now attends school with her two new best friends Youseline and Estania, and is counting, reading, and writing. Last year she finished first grade as first in her class.

Estania

11 Years Old                                                                         Estania in her first month at Kay Angel

                   

Photos Courtesy of Lia van de Donk

Estania was born on July 30th, 2000, in Cyvadier, Haiti, east of Jacmel. After her mother passed away from AIDS, Estania was left in the care of her sister. While living with her sister she was taken to Hospital St. Michel, due to issues with her breathing and the coughing up of blood. At the hospital they discovered that Estania was suffering from tuberculosis (TB) and was HIV-positive.

Due to the stigma attached to such a diagnosis, Estania’s sister abandoned her out of fear and lack of understanding about the diseases she was suffering from.

In January 2008, Estania came to live at Kay Angel, where she was placed on oxygen and anti-TB treatment. Due to the severity of her illness, she was quarantined for two months until the treatment was over, and was then able to begin taking ARV medication. Estania responded well to the ARV medication and began to gain weight, but was still regularly struggling with shortness of breath. After visiting a heart specialist in Port-au-Prince, it was discovered that she had an enlarged heart, which is reported to be a common condition amongst children born with HIV. Estania has been given medication to help her heart, and her breathing has improved.

Estania had only minimal schooling before coming to Kay Angel, and since her arrival she now attends school with her friends Youseline and Melinda.

Sophie

4 Years Old                                                                           Sophie the day we found her

              

Photos Courtesy of Lia van de Donk

On October 22nd, 2007 Sophie Valentine was abandoned at the steps of Hospital St Michel. The doctors at the hospital estimated that she was born that same day, one month pre-mature, from a mother who was HIV-positive, since she tested HIV- positive. She was taken in by Lia and became the fourth child to become a part of the Kay Angel family.

Sophie was put on oxygen and IV fluids and spent the first two weeks in an incubator. Sophie was also immediately put on prophylaxes medication for her HIV status. Sophie was tested periodically in order to follow her HIV status. Her very last test, at 18 months old, came back negative. Today, Sophie is HIV negative.

Like Youseline, Melinda and Estania, Sophie is happy and in good health. Since their arrival ay Kay Angel they have been provided both physical and emotional support, helping them deal with their illnesses, as well as the emotional scars that come from their personal struggles.  Their lives have drastically changed for the better, and although each of the girls stories are unique, they are all too common in Haiti, where approximately 150,000 children are orphaned by HIV/AIDS and there were as many as 380,000 orphans before the January 2010 earthquake.

It is clear that lives are improved and saved when there is access to necessary resources, but these resources do not come easy to the individuals and organizations providing the support. Additionally, the causes of HIV infection in children point to some of the major issues surrounding HIV in Haiti; issues like education, prevention, access, stigma and overall support available to at-risk and infected individuals.

All of these young girls were infected with HIV through mother-to-child transmission (MTCT), also known as vertical transmission, which remains a significant mode of transmission in Haiti. The historical rate of mother-to-child transmission in Haiti is 27% (UNAIDS, 2004), yet programs designed to reduce the rate of MTCT have proven to be effective and are feasible in developing nations such as Haiti. In order to affectively reduce HIV infection and MTCT there needs to be an emphasis on education, testing, early diagnosis, and overall access and services to women throughout Haiti. Additionally, the deep-rooted stigma attached to the virus that often leads to at-risk individuals going undiagnosed and passing the virus onto their spouse or child must be addressed.

Conversations With the Living is telling the story of Kay Angel and the children there, because they are stories of hope existent within the harsh reality of child orphans in Haiti. We must shed light on the good work being done and what is working, as well as bring and keep attention on the work that still needs to be done. In order for organizations like Kay Angel to continue providing children life saving medication and a loving home, they must be recognized and supported.

If the work being done by Kay Angel were adopted and expanded upon, the impact would be an amazing benefit to Haiti as a whole, and bridge the gap between the children affected and infected with HIV and the communities in which they live.

We will continue to keep you posted on the documentary’s progress on our production blog and urge you to visit ad subscribe to Kay Angel’s blog to read more about the amazing work they are doing. You can find their blog and more information at http://kayangel.org/.

Special thanks to Lia van de Donk for taking the time to provide photos and written content to the above post and for allowing us to share the incredible work of Kay Angel with you.

Thank you for your continued support.

– The Conversations With the Living team

World AIDS Day and Conversations With the Living

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WORLD AIDS DAY 2011

Today is World AIDS Day. Since 1988 World AIDS Day has been held on December 1st and provides the opportunity for people around the world to unite in the fight against HIV, offer support to those affected and infected with HIV, and honor the lives of those who have died as a result of the virus.

World AIDS Day is one day, every year, dedicated to raising money, fighting prejudice, increasing awareness, improving education and helping people understand the facts surrounding HIV/AIDS globally. World AIDS Day is a way to remind people that AIDS is still a serious issue affecting millions of people each year. Although numerous organizations and activists work everyday to address the issue of HIV/AIDS, the global community needs to remember the importance of raising awareness of HIV year round. The global crisis goes relatively unnoticed in the mainstream media, and oftentimes, unless directly affected, people tend to know very little about HIV/AIDS in their own communities, cities, and countries. World AIDS day is an opportunity to learn facts about HIV and use that knowledge to help in your community.

Even as scientific advances are made in HIV treatment, many people still go without access to resources and struggle with properly educating people about the virus, which plays a large role in reducing infection rates and fighting the discrimination and stigma often attached to the virus.

There are currently 33 million people living with HIV. This year 1.8 million HIV-positive persons died of Aids-related-illnesses and as many as 2.7 million were infected, that is over seven thousand people a day. HIV is a threat to men, women and children on all continents around the world.

GETTING TO ZERO

This year’s World AIDS Day theme is Getting to Zero, which focuses on three targets, Zero new HIV infections, Zero discrimination, and Zero AIDS-related deaths. This is the goal of all goals. This is a call to arms, the very point of the global fight against HIV. There is a long way to go, but by focusing on reducing infection, stigma and deaths, given the progress made within populations with access to live saving medications and nutrition, this is a goal that cultivates great hope and aims to prove what can be accomplished with compassion and cooperation efforts.

Conversations With the Living is a documentary film that focuses on this hope and the amazing progress made when there is access to resources.

CONVERSATIONS WITH THE LIVING & HIV

Conversations With the Living is a feature length documentary that focuses on HIV-positive orphans and the daily lives of these children. In the process, the film highlights the network dedicated to bringing HIV-positive orphans the medication, food, housing, education, and emotional support that keeps them alive. We will trace the path of that medication from the child through the entire network that made it possible, showing the dedicated individuals that work tirelessly every day, grinding through routine and unforeseen challenges and providing real solutions to Haiti’s battle against HIV. It takes effort, organization, continued funding, and unerring dedication on the part of countless people to give these children a chance for survival and a future where they can be engaged and accepted in their communities.

As government agencies and aid organizations tighten their belts due to the struggling economy; HIV, and the core issues that make it difficult to combat, like poverty, malnourishment, and lack of access to medication, are tightening their grip on the most vulnerable populations. But, there are people doing incredible work, providing both access and support to those affected by and infected with HIV in Haiti, and we are telling their story.

The ultimate goal of Conversations with the Living is to draw attention to HIV/AIDS in the developing world and continue to raise awareness of the need to support AIDS organizations around the world. We are determined to show that HIV progress does not happen by accident and that the network of caregivers and activists that work together to provide for these children is intricate and delicate.

This network provides real hope for the future of these children and represents what is positive and possible. The positive strides made against the disease in countries like Haiti and the people who make it possible must not only be recognized, but also supported. Raising and maintaining awareness about the efforts of dedicated HIV workers must happen and their work must be expanded upon.

HIV & HAITI

In Haiti, an estimated 40,000 people die of AIDS every year. These are grim numbers when considering the size of the country, which is roughly the size of Maryland. When taking into account that a large percentage of at-risk Haitians who do not get tested due to access and fear of social stigma, experts believe the national statistic is much higher than recorded; some believe as high as 11%.Currently one in twenty Haitians is infected with HIV/AIDS and there are over 150,000 AIDS orphan.

No one should ever die of a treatable disease. Haiti’s struggle with AIDS and the elements of history that have contributed to its prevalence, still exist and continue to exacerbate the issue. The failure to provide access and address the societal issues surrounding HIV in Haiti only maintains and perpetuates a system that produces more death, deprivation, and disease.

For people living in developed countries around the world, HIV has become a manageable disease, however the majority of the world’s people living in the developing world are not afforded that luxury. Their children are the next generation of survivors, advocates and activists, and they are proof positive of what is possible given the resources and support.

When the HIV-positive are provided the proper resources in Haiti, they are happy, healthy and hopeful. Lives are being saved and people need to know what is working in Haiti and what needs to be done to maintain this work and broaden its reach. 

There is a vital need to raise money, increase awareness, fight prejudice and improve education and your participation is needed, not just today, but everyday.

– Leigh E. Carlson

CWTL Crew Q&A: Gregory Cassagnol on HIV/AIDS in Haiti

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What is the prevalence of HIV/AIDS in Haiti?
One in twenty Haitians in Haiti is infected with HIV/AIDS. That’s a startling statistic for a developed country in the Western Hemisphere.
What is the prognosis for these HIV positive orphans?
The prognosis is grim for many of the HIV + orphans in Haiti. After the 2010 earthquake, the situation has become signifigantly worse. It’s imperative that something is done before Haiti loses a generation of children to HIV/AIDS.

Written by conversationswiththeliving

November 4, 2011 at 3:30 pm

CWTL Crew Q&A: Gregory Cassagnol on why Haiti is important

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Why is Haiti important?
Haiti is important because it’s history, from it’s days as the most profitable of the French colonies in the New World, to it’s historic slave rebellion that birthed a sovereign nation in 1804, on through its current state post the 2010 earthquake; reflects the indomidable will of a people fighting social ills and constant tumult all while mantaining a strong sense of humanity and culture.

Written by conversationswiththeliving

October 28, 2011 at 3:30 pm

CWTL Crew Q&A: Gregory Cassagnol on the challenges of fundraising for a documentary

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How have you raised funds? Describe your methods and why you chose that methodology.
Our team has self financed production and has raised funds through local fundraising initiatives.
Why Indie Go Go?
Indie Go Go provides the platform for us to reach the individuals that care about stories like ours and see the value of producing this type of dialogue on the broadest stage possible. We need forward thinking and socially responsible people to support us. Indie Go Go helps us reach that group.

Written by conversationswiththeliving

October 21, 2011 at 3:30 pm

CWTL, AIDS WALK LOS ANGELES AND BRIDGING THE GAP

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The Conversations With the Living west coast team will be walking in the 27th annual AIDS WALK LOS ANGELES tomorrow, October 16th to show our support for the organizations that are doing incredible work to combat HIV/AIDS here in LA, and to help represent the global fight against HIV/AIDS.

AIDS Walk Los Angeles has benefited AIDS Project Los Angeles (APLA) since 1985. APLA works to help people affected by HIV disease; reduce the incidence of HIV infection; and advocate for fair and effective HIV–related public policy.

Conversations With the Living is a documentary film that is talking about what is possible when people come together to form a network that works day-to-day to improve the lives of the HIV+, by providing medication, food, housing, education and support. Our message, our mission is supported by the fact that the tireless work of individuals over the years has managed to make a positive impact on the lives of those affected by HIV in Haiti, and this network must be expanded.

Imagine how the lives of the HIV+ could improve in developing countries like Haiti, if there was a greater level of social acceptance and if the methods that are working were recognized and expanded upon.

We walk tomorrow to support the local efforts here in LA, celebrate the strong community of support and to do our part to bridge the gap.

There is a large disparity between what is possible in the fight against HIV in developing countries when resources are available and the actual amount of available resources. Looking at what has been accomplished over decades of dedication to reducing HIV infection, increasing awareness and providing support for the HIV+ in developed countries; this disparity exists because the education, resources and support are not getting to the regions of the world with the highest infection rates.

People in developed countries and underdeveloped countries require the same treatment and lives are saved and improved by the same methods. It has been over 30 years since HIV became household term and a lot of progress has been made, affectively changing the course of this deadly disease and saving countless lives—but in terms of HIV globally it is not only time to look back on the history of HIV, but to look towards a future where changing the course of HIV/AIDS is not just a story we tell in developed countries like the United States, but a reality around the world.

AIDS WALK LOS ANGELES is about individuals, everyday people coming together in solidarity for a purpose – Imagine if this type of event were to take place in a developing country where the population affected could be supported and no longer hide in the shadows. Imagine the impact if the level of acceptance and support that we will feel tomorrow in Los Angeles was felt around the world.

We walk to support and celebrate the work of individuals and organizations here in LA and around the world that are working to save millions of lives.

We walk to bridge the gap.

– Leigh E. Carlson

Written by conversationswiththeliving

October 15, 2011 at 5:52 pm