Isabel Fanny Mamani Quispe and her daughter Carmen Estrella | © K. Pelaez / HI
Isabel Fanny's daughter, Carmen, has Down's syndrome. Thanks to HI's psychosocial support, she has learned to overcome the difficulties and move forward with her child.
Isabel Fanny Mamani Quispe is 45 years old. She and her husband have four children. Their daughter Carmen Estrella, aged 3, was born with Down's syndrome, also called trisomy 21. With the support of HI, Isabel Fanny has learnt to take care of herself so that she is strong enough to support her children.
"My life has changed a lot since my daughter was born. Even when I was pregnant, I had a feeling that things were about to change radically, without knowing why. When she was born, I wasn't told that about her trisomy 21. I had to wait 8 hours before I could simply hold her in my arms. It was only then that the doctors told me she had Down's syndrome," recalls Isabel Fanny.
Carmen was rejected by her father's family. Isabel Fanny's husband distanced himself from his relatives because they blamed the Down's syndrome on her age. They kept telling him that it was her fault, that he had taken a risk by marrying an "old woman". Isabel Fanny's mother also made unbelievably violent comments, saying that Carmen “was stupid, that she would never be able to achieve her goals and that it would be better if she died”.
The first few months were complicated for the little girl. At 5 months, Carmen weighed just 3.5 kg and she was continuing to lose weight. Her parents took her to hospital, where she was diagnosed with an anal fistula. An initial operation enabled her to make bowel movements. By the time she was two and a half, the little girl had already undergone five operations.
"Today, Carmen can move her bowels, but it's still very painful for her. It's very hard for me as a mother... But I have to stay strong. Carmen taught me that lesson: don't be afraid of anything. I'm not ashamed to tell people that my daughter has Down's syndrome. I explain to them what it is and that the causes are genetic. I'm very proud of my daughter."
Isabel Fanny found out about HI through the Bolivian foundation Virgen de Copacabana, where she was told about the psychosocial support workshops organised by the association. In these workshops, Isabel Fanny met and exchanged ideas with other mothers of children with various types of disability.
When she talks about what she learnt in these workshops, Isabel Fanny is enthusiastic: "HI has helped me a lot, especially in facing up to reality. We learnt to value ourselves and to take care of ourselves. During the workshops run by HI professionals, I was helped to solve my family, financial and psychological problems. I learnt to organise myself, to delegate to other family members, whereas before I did everything myself: cooking, washing my daughter, supporting my other children..."
"HI has taught me to take care of myself too. Today, I know that if I'm not well, my children will suffer too. What I used to do on my own, 24 hours a day, 7 days a week, I'm now delegating in part so that I have some time to myself to look after my health, to resume activities that I haven’t been able to do since Carmen was born.”
Meeting other mums and talking to them helped Isabel Fanny to grow. Through the other participants, she discovered the existence of a sisterhood of women who all wanted to move forward, to fight for their children to be accepted in society. Like all these mothers, Isabel Fanny wants Carmen to be independent, to be able to stand up for herself.
"I know that Carmen has an intellectual disability, but I also know that she will be all right. Thanks to the support I have received, I’ve met people and support networks. I have learnt that my daughter, our children, have rights in life, the right to many opportunities. We still have a long way to go because society is very cruel, so we need the help and knowledge of professionals. But we will support and defend our children.”
In Bolivia, HI is working to improve the health of children and adolescents and improve their access to rehabilitation. This project, funded by the DGD until 2024, is being implemented in the departments of La Paz and Santa Cruz, in partnership with the Bolivian Ministry of Health and the Universidad Mayor de San Andrés. Its aim is to train professionals, raise community awareness, set up screening campaigns and improve access to health services. Parents of children with disabilities also receive psychosocial support. 284 people are directly benefiting from these operations.