Children Affected by HIV/AIDS - Dare to Care Program
Mission
Grounded in the firm belief that all persons - the healthy, the sick, and terminally ill - are entitled to live worthy lives, we are committed to the care of abandoned children afflicted with HIV/AIDS, ensuring that they receive all the love and care they need and deserve.
History
Dare to Care is the HIV/AIDS program of Mustard Seed Communities that was established out of the great need to provide care to abandoned or orphaned HIV/AIDS infected children in Jamaica.
The first apostolate for Dare to Care children was opened to seven HIV positive children on September 14, 2000. Dare to Care's first official home was established in St Catherine for 20 children. Filled to capacity after two years, another Home called Matthew 25:40 was set up in Kingston. Following which Martha’s House was created and recently rebuilt at the complex in St. Catherine.
In 2002, Mustard Seed Communities was asked to expand its reach to Zimbabwe due to the increasing needs surrounding HIV/AIDS children there. With an ever-growing population of children orphaned as a result of HIV/AIDS and “child-headed households,” the need for housing and care for these children continues to grow. The program in Zimbabwe includes two houses which can accommodate 30 children. One house (Freedom) is specifically designated for young babies who may be HIV positive. The other home (Generosity) caters to those children between 5 and 10 years. This offers these children the opportunity to live their lives under the proper care, ensuring them the best possible social, physical, medical, educational and spiritual service.
Dare to Care strives to provide worthwhile and sufficient care for the children by consistently learning more about HIV/AIDS. In order to gain further knowledge, Dare to Care works as closely as possible with the relevant state bodies such as the Ministry of Health, National AIDS Committee and the Child Development Agency.
In the early stages of the program, the focus of the initial Dare to Care program was to provide hospice care to children who were at the end stages of the disease. The focus has since shifted to giving these children a real chance at life, which would mean providing for all of their developmental and psychosocial needs as well as prolonging their lives.
Prolonging the lives of these children would need the intervention of medication, nutrition and psychosocial support, all of which are expensive. However, saving lives was put at the forefront and it was against this background, a drive was undertaken by Dare to Care to raise funds for medication. Additionally, Pharmaceutical companies both locally and overseas were approached with the aim of soliciting antiretroviral drugs for the children. This proved to be very challenging as many of the drug companies were not willing to donate these expensive drugs.
Medical
The government does not subsidize anti-retroviral drugs (HIV/AIDS medication), thus Dare to Care has to bear the full cost of these very expensive drugs. In addition to the supply of anti-retroviral therapy, the medical condition of the children has to be monitored once they are placed on these drugs. It is required that a CD4/CD8 test (gives an idea of the status of the immune system) be done twice yearly. This is an alternative or an addition to the viral load test (test the level of the virus in the body). To date, the home has not been able to do any viral load testing because of the tremendous cost involved. However, they have been fortunate to get sponsorship from generous individuals for CD4/CD8 testing and so they have a fairly good idea of the medical condition of the children.
Education
In both Jamaica and Zimbabwe, most of our children attend the Little Angels Learning Center, a school system operated by MSC. Some of the older children attend school in the surrounding communities. It is the aim of Dare to Care to send all of the children outside to school, to allow them the experience of being educated in the regular school system. However, this continues to present a challenge due to the stigmas associated with the disease.
Spirituality
A lot of emphasis is placed on the children's Spirituality, as Christ remains their main source of existence. The children are baptized Catholics and participate in daily spiritual activities as well as attending weekly church services. The spiritual activities include spending 20 minutes in the adoration chapel each day, saying the rosary as well as having morning and evening devotion. The staff members are also encouraged to take part in all of these spiritual activities.
Psychosocial
Most of our children are becoming aware of their HIV positive status as well as they are now acting out experiences in the past. Counseling sessions, other therapeutic activities are encouraged in the homes. Psychosocial support has proven to be the program's biggest challenge, as psychological care for children in Jamaica is very expensive as well as limited. They are currently looking into the possibility of getting a full time counselor for the homes as well as they are discussing the possibility of setting up a mentoring program for the children, where responsible and mature citizens play the role of big brothers or sisters, sponsor moms or dads with the hope that they would impact the lives of the children in a meaningful way.
Successes Achieved
Children with HIV/AIDS are living longer and a better quality of life.
Dare to Care's biggest success is that of saving or prolonging the lives of children, who were before given a death sentence because they are HIV positive. Most of the children when placed at Dare to Care are usually at a stage of dying or in very bad condition. With the intervention of medication and love that the home provides, the majority of the children have made a complete turnaround. Some 85% of them who are placed at the Home are living longer and relatively healthy and normal lives. The Home has not reported any deaths in the past two years.
One example of saving the life of a child is the story of our sixteen-year-old resident who came to the home three months pregnant. After being admitted to the home she was immediately placed on the mother to child transmission of HIV program at the University Hospital where she was treated with AIDS medication prior to delivery and where the baby was also treated for six weeks after his birth. Recent tests done revealed that the baby (who is now one year old) is HIV negative.
With the stigma attached to the disease children living with HIV/AIDS are usually mistreated and isolated from society and so many time they are not given a chance to live a normal life. That is, they are barred from schools if their status is known, they are treated with disdain and disregard by their communities and even by family and most of all they are orphaned by parents who have died from AIDS and/or abandoned by relatives who do not want to have any association with them. These children are usually developmentally delayed and emotionally and mentally scared.
At Dare to Care the children are treated like normal children, in that they are schooled, which will help with the developmental aspect of their lives as well as they are given a lot of love and attention by staff, volunteers and visitors. This is evidence by how happy and loving the children are. Children who were once withdrawn, sad and had given up on life are now happy and willing to fight to live.
The two older girls in the Home (ages 14 & 16) who contracted HIV/AIDS through sexual abuse are now in a safer environment where they can develop and grow and be children. They are currently being exposed to skills training as well as academics so as to prepare them for society where as young adults they can gain employment and live valuable lives. These girls are very much aware of their HIV positive status and have accepted it and are better able to deal with it because of the counseling they receive at the home. These girls are developing into strong individuals and are now expressing the desire to bring more awareness to the disease by speaking of their experiences.
Access to Treatment
Not too long ago HIV positive people were given a death sentence in that, treatment for the disease was either not available or too expensive. In recent times, more and more AIDS medication is becoming available to those infected at a cheaper rate. Lasco Pharmaceutical initiated the supply of generic drugs at a much cheaper rate than the competing brands; Lasco also donates about 20% of these important drugs to the Home. As a result, thirty-two of the children who were not doing well clinically could be placed on treatment.
The Home is now receiving free antiretroviral drugs for all of the children on meds from the Global fund (Aid from the USA government for HIV infected persons in the Caribbean). This will allow us to start treating the other children as well as sustaining the treatment for those who are already on the medication.
Our children have access to free clinical care at the pediatrics HIV/AIDS clinics set up in the local Hospitals. Pediatrics HIV/AIDS specialists, who have taken a keen interest in the medical care of the children, monitor the children. As a result, the children's medical conditions have improved significantly.
Removing some of the stigma of HIV/AIDS & building greater sensitivity.
The stigmatization of individuals infected with HIV or AIDS remains a central issue. However, the children at Dare to Care are helping to break down any barriers or walls created against them by society by showing the community that they are loving, caring, relatively healthy and normal children who love to laugh and play.
Many people have the perception that HIV positive children are 'malnourished-looking' children with lots of sores covering their bodies. This perception is quickly erased when people meet the healthy-looking, bright, loving children at Dare to Care. The home has frequent and repeat visits from individuals from different groups, many of whom are now requesting to take the children out as well as having them spend time with their families in their private homes.
