Paul Kayonga: Father of 5 boys in Uganda with Duchenne

Paul Kayonga’s children were born normal. But as soon as they got 6 years and onward, the changes began. Their calves would get so swollen that they would become hard. It all started with his first child, Richard. He suspected Polio and was told that perhaps he had not been attended to by a qualified doctor.

Paul took him to Milago National Referral Hospital, and after 6 months of checkups the medical personnel told him they couldn’t find anything wrong. But gradually the boy deteriorated. I was at home and they came carrying him saying the boy had refused to walk. At first I thought it was pretence.

The next child, Gerald, Richard’s follower, presented similar symptoms. He later got worse and the school asked the parents to keep the boys home since they couldn’t cope in a normal school environment. Paul and his wife then took to looking after these young adults, whose handicap meant that they were cared for like babies.

Eventually, when he had lost all his strength and looked like an Aids patient, my eldest son died at 25 years.

Shortly after Richard died at age 25, Gerald passed on at the age of 24.

When Julius, his 4th born turned 8, the same patterns manifested. The once healthy, bubbly boy began to lose his strength.With that one, I have not bothered that much. I have no money and I’m also hypertensive. I resigned to my fate and told him to wait on the Lord. Then the others fell ill too.

About 5 years ago Paul Kayonga’s wife, apparently tired, packed her bags and left. He now cares for his 3 sons on his own. According to doctors, Paul’s former wife carries the gene and any other male child she might have will most likely have the same condition.It’s a X-recessive gene, that’s how we describe it. So these conditions are seen in boys. Because the boys have one X. The one abnormal X definitely shows that you are going to have that presenting condition.

But you have one abnormal X, and one normal X, it won’t be seen. Which is girls have 2 X’s and boys have 1 X and 1 Y.

These cases are so rare that not much attention has been given to the condition, but research is underway. And an online search shows that, so far gene therapy tested on dogs, has been successful, paving the way for human clinical trials.In the meantime, the boys are struggling, barely surviving. They have difficulty getting up from a sitting position. Someone needs to hold onto something, then as they are getting up they use the leg to support themself and then stretch up the body, and then eventually walk.

So that’s the first stage, usually seen at 5 years. Then at around 8, they have an equina, the feet…they walk but the heal doesn’t touch the ground.

Then they have the pseudohypotrophia of the calf muscles. The muscle is big, not because they are so strong but it’s fat and some little muscle.Then, eventually they become wheelchair-bound because they can’t go about.

Kayonga has a 21 year old daughter who is normal. But his 3 boys, aged 15, 12 and 8 are already showing growing signs at different stages.

The disease can be fatal. It starts with the skeletal muscles. We’re talking about muscles that help you move your legs, your hand. But it progresses to affect the muscles responsible for breathing and diaphragm specifically.

So they have difficulty breathing, which becomes worse at night, when they usually die due to respiratory failure.A fellow resident of Paul’s village Saganga in Koyaroy Wakiso District suggested he tries out CORSU Hospital, and he brought his eldest son. The day we visited, the three boys were to have a biopsy done on each of them to determine what kind of muscular dystrophy they had.

There are 2 conditions, if you have like the milder form which is the Becker, then the most severe form is the Duchenne Muscular Dystrophy.

So, this one, the milder form we do some physiotherapy to increase muscle power. We can do that. Then for the other one, yes we do some physiotherapy but we know that cause. It’s a poor prognosis, so we usually try to prolong the process. Do some exercises, then we provide wheelchairs. Some need respiratory support, oxygen maybe at night. Then we need to treat oral refreshment, so they can live as long as they can.

In 2 weeks, Paul Kayonga will know what exactly has plagued his family, that he has not had answers for for over 18 years.

Josephine Karungi , NTV