One test could have saved us heartache

 For 11 years, James Kabindu and his wife Alice Ng’endu didn’t know what condition their two special-needs children had.

After having what seemed to be a normal healthy child, James and Alice progressively became dismayed at the health problems that plagued their child.

“George was a happy and playful boy,” James remembers, “but (by the time he was a year old) we noticed that he didn’t want to play anymore. He wanted to sleep all day. He couldn’t maintain eye contact, couldn’t walk without support or hold things in his hand. He also didn’t want to eat.”

Then he started convulsing. “We had him assessed and the tests said he had autism with elements of epilepsy and cerebral palsy.”

James enrolled George in a private boarding school for children with special needs when he was a year and a half old. “He really deteriorated,” James says in a low voice. “ He could no longer sit upright or walk. His spine curved. We later learned that the kids were put on their backs all day. The school wasn’t taking care of them! George would cry a lot when we’d drop him at school, but the teachers would tell us he’d calm down after we left.”

Later, James transferred him to a public school that had an autistic unit. George, however, needed special attention because the convulsing had worsened. They decided to keep him home. At the time, James and Alice were employed – James was managing information systems for an imports company, Alice was running a business. “The house helps we got didn’t stay for more than a week. My wife eventually stopped working to give George fulltime care.”

To their dismay their second child, Angel, started to exhibit the same symptoms as their first child.

In 2008, the couple had Angel. “She started showing the same symptoms at nine months that George had showed. It was hard for us to accept that we had another child with special needs.” Doctors who assessed Angel drew the same conclusion. She had  autism. George’s and Angel’s convulsions became more frequent as they grew older. “Each time they convulsed, a part of their brain got damaged, so they became more intellectually disabled and more dependent.”

Thanks to help from family and friends James and Alice eventually discovered their children had PKU (Phenylketonuria).

 James and his wife desperately wanted answers for George and Angel’s condition. They held a fundraiser in 2015 to finance a medical trip to India. Friends, family and well-wishers gave them Sh1.6 million.

“In India, the doctors met us at the airport and took us straight to the hospital to rest then started testing.”

On the fifth day of tests, the doctors zeroed in on what the condition was. “They told us that our children had PKU [Phenylketonuria],” says James.

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