Story from the Boston Speechies
November 9, 2015
Trip Update – Thursday April 18, 2013
November 9, 2015

She brought her daughter’s treatment home so it could benefit other parents.

A mother with a special needs daughter who could have continued taking her child abroad for therapy, like she had been doing all along, instead decided provide the same high quality care for other other parents.

 

At Tunaweza Children’s Centre, you will be met with jolly children running around noisely, like you would expect in any other children’s centre. Except, it is special in the case of these children at Tunaweza because they are special needs children, born with defects that affect their normal development.

However, one mother’s experience with a special needs child who had to be taken abroad to get the necessary special care bore in her a desire to bring this service closer to home and help other parents in similar situations. That mother, Pamela Kakonge, the Chief Executive Officer of Tunaweza Children’s Centre, founded the centre where these children have also gotten a chance to at least learn how to do things like other children their age.

The experience that bore the centre
Kakonge, a mother of two, narrates, “My daughter, Gabriel, was “dead” at birth. She showed no sign of life at birth. She was lifeless but the doctor checked her and discovered a very faint pulse, a sign that she could be revived.The doctors pumped oxygen into her lungs to resuscitate her, and in the process, some of veins in her brain were damaged, thus causing the brain damage that’s affected her to date.”

Gabby, as the mother fondly refers to her, was admitted to the Intensive Care Unit (ICU) for a month. When she finally came out, the doctor told the parents that she would never walk or talk. “I am the kind of person who asks so many questions but when I was told the news, I did not have anything to say. All I did was cry because I could not imagine my daughter not having a normal life like any other child,” recounts the mother. However, she had to pick herself up and find help for her child. When they left hospital, she says she was set on finding treatment for her daughter because she had been told that with therapy, Gabriel would be able to pick up slowly.

“I went to some hospitals in Nairobi and later to South Africa. But the hospitals and accommodation in these two countries were very expensive. I decided to go to the United States because I knew I could get free accommodation from relatives living there,” she says. In the US, my daughter started improving because of the constant therapy she was getting,” she recalls.

The prices to pay
To have enough time and liberty to take care of her daughter, Kakonge had to resign from her job. “There was no way my bosses were going to let me be away from work for two to three months three times a year. So, I kept on getting part time jobs whenever I came back to Kampala. I needed to prove to my family that I was also trying to raise money. Gabby’s treatment and the constant trips were very expensive. But I had the support of my husband and both our families.”

She explains that while she still had to face the challenge of knowing that her child would never be normal, the realisation that therapy would make a difference shifted the challenge to money. “Although I was getting all the help I needed from my family, I was worried because with all the money they were giving me, there were no tangible results for a while.”

“Whenever she got seizures, we had to go back to zero. She forgot how to talk, walk and all the other things she had learnt at every seizure. But in all this, I was very patient.”

The angel on the train
Early this year while on a train from New York to Boston for Gabby’s treatment, she sat next to a lady who was inquisitive about her daughter’s condition. “When I narrated my ordeal to her, she told me that I did not have to come to the states for treatment all the time.”

The lady organised a gathering at which Kakonge was one of the speakers. Her story touched some people. They offered to help her start a one-stop therapeutical centre for children like hers.

“I found their idea brilliant. I knew that with a centre in Kampala, I would not have to keep on travelling so far, and other parents with children like mine would benefit from it. When I came back in June this year, I started looking for a place where to establish the centre,” she says.

Tunaweza is born
“With the help of family and friends, I got a house and was also able to buy tickets for therapists and counsellors who would work at the centre.”

With everything in place, she organised a breakfast for parents who started enrolling their children in the centre. At the moment, the school has between five to 12 children.

To the parents: that child can get better
Kakonge explains that the numbers keep on fluctuating because parents do not give children with development disabilities priority. “I noticed this at the beginning of this term. When the school opened, we only had three children. The others were nowhere to be seen. The parents said they did not have money but they had taken the normal children to school.” Besides not giving such children priority, some parents are in denial without any hope that their children could grow into normal child.

“However, children with such defects, if put on therapy as soon as the problem is detected, can live a normal life. This is evident with my daughter; where she was unable to do anything before, she can now talk and walk though with a slight limp. She even goes to a normal school from 8am to 7pm then comes to the centre for therapy. I’m only tasked to ensure that she does not get seizures.”