Asio Rebecca, 27: "I almost gave up"
In Uganda, children with disabilities are mostly hidden away. Stigma around disability often lead to people regarding them as “God's punishment”. Many mothers are abandoned by their husbands and sometimes even disowned by their families. Asio Rebecca, 27, tells us how she and her daughter Faith arrived at the self-help centre Suubi Lyaffe (translated: Our hope) in Kampala and how her life and that of her daughter Faith has since changed.
When Asio Rebecca came to the self-help centre Suubi Lyaffe for the first time half a year ago with her little daughter Faith, she was in a bad condition - she had lost a lot of weight, she felt weak, and her then one-year-old baby Faith was also underweight. Faith is now almost 2, but her cognitive and motor development is slower than that of other children. Asio Rebecca does not know the exact cause.
Faith’s developmental delay began with a severe illness
"Faith was a thriving child after she was born and developed normally," Asio Rebecca narrated. "One day she got a slight cough and then a fever. Two days later she suddenly lost consciousness. I rushed her to the hospital, where the doctors told me that she had fallen into a coma. After four days she woke up from the coma, but her condition was very unstable." Faith in was hospitalized for four months. She was very weak and had constant seizures. However, tests for possible infectious diseases came up negative and medication did not work. After four months, her condition became stable enough, so she was discharged.
According to Rebecca, things did not get better. "Faith's body remained stiff," she said. "She simply remained in a stiff position. She could not move her hands, legs or neck. She only felt comfortable when she lay on her back. For another three months, I took her to from one hospital to another. Tests were once again carried out, but nothing worked. All those hospital visits cost so much money that I had to seek financial help from people around me."
A restored mother-child relationship
Isolated and powerless
One day, a neighbour told Asio Rebecca about Suubi Lyaffe. "I got the information just in time," she said. "I was already deeply depressed. I had lost my courage, and even my love for my child. When it became clear that my daughter is different from other children, people around me became mean. Many people in the neighbourhood started to speak badly about Falth. My husband had left me, and even my family rejected us. To take care of Faith, I had to give up my job as a midwife. Life became very hard. At the same time, I didn't know what else I could do for Faith. I couldn't understand what she needed, I had no access to her."
Faith's new path
At Suubi Lyaffe Faith was signed up for physiotherapy and this quickly showed results. Asio Rebecca was greatly astonished. "I couldn't get her to sit before. She could only lie there even when I had to feed her. Now she rolls over. She can sit up and she reacts when something happens around her. When someone speaks, she now turns her head in the direction of the voice. And when Faith falls sick, Malteser International takes care of her treatment."
Fresh courage for Rebecca
Rebecca reckons her child is not the only one who has changed. "I have regained my strength and the lost love for my child at Suubi Lyaffe," she said. "The physiotherapists encourage us and constantly tell us mothers that we are the ones who are most needed to give our children lots of love, more than anyone else can. I have learned that it's not just about feeding the child, but the most important thing is giving her love and understanding while responding to her needs. I have also learned exercises from the physiotherapists that I can do at home with Faith. The employees of Suubi Lyaffe always treat us mothers very well. They always find a way to help us when we come to them with problems."
COVID-19: Malteser International provides
basic supply for Rebcca and Faith
Rebecca and her daughter, Faith have also been negatively affected by the COVID-19 pandemic. "Due to the restrictions, it has become impossible for us to find work," Rebecca said. "I am so glad that Malteser International contacted me right at the beginning. They take care of us and brought us food every week. Unfortunately, Faith's physiotherapy is also not currently taking place at the Suubi Lyaffe centre because of the lockdown. Even though I miss the contact with the other mothers, I am very grateful that the physiotherapist visits us at home and does the exercises with Faith here."
What next for Faith?
"Faith, like the other children of Suubi Lyaffe, has speaking difficulties. I would therefore like the centre to have support from a speech therapist for the children. We mothers are often at a loss and do not know how to support the language development of our children. We would be very grateful for that. My wish for Faith is that one day she'll be able to say everything she feels. That she'll be fine and that she can take care of herself once I am no longer able to."
Your donation: Empower mothers to care for their children with disabilities
Malteser International has supported Suubi Lyaffe since 2016. Donations have gone towards the financing of necessary resources as well as physiotherapy and exercise therapy for the children. Malteser International funds have also been used to cover the costs of transportation and medical treatment. As part of our pandemic, we provide mothers with food packages to ensure they have the essentials.
Your donation helps us support the organization to care for children with disabilities and help them develop.