Paul Kayonga: Father of 5 boys in Uganda with Duchenne

By | October 27, 2018
Josephine Karungi , NTV
Josephine Karungi
Josephine Karungi , of NTV News Uganda, did a story on Paul Kayonga of Uganda in 2017. The YouTube video and transcript follows.

It is quite compelling. Mr. Kayonga has had 5 (FIVE!) boys with Duchenne Muscular Dystrophy. It is people like Mr. Kayonga that I want The Everett and Austin Project to help.

“…48-year old Paul Kayonga, a resident of Wakiso district…has looked on helplessly as a disease he can’t understand slowly drains life out of his boys, one at a time.”

Transcript

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

Julius' Expressions

Julius’ Expressions

10 thoughts on “Paul Kayonga: Father of 5 boys in Uganda with Duchenne

  1. Douglas Wehrle

    Terrible disease. As a parent of a healthy child I am grateful and heartbroken to read these accounts.

    Reply
  2. Ellen J Zellner

    I am saddened that Paul is on his own to care for his suffering boys. My son has a disease called ” Marfan Syndrome” which if not diagnosed early( my son had symptoms visible at birth but not diagnosed until I took him to a specialist at Helen Hayes Rehab Hospital in New York State at the age of 17, it can be fatal. It affects the aorta of the heart which needs to be regularly checked by a cardiologist so that it doesn’t become enlarged( or it will burst causing instant death) long thin bones which easily fracture, a lens in the eye, and curvature of the spine. It is a long haul, he also is autistic and been abused by that affliction. I empathize with you Paul and the helpless feeling that there is nothing you can do to make your sons well. Pray hard all the time-consuming that is the greatest gift we can give our children is faith in God.

    Reply
    1. Tim Gillen Post author

      I know. It’s just crazy how much pain and hardship is going on in the world. We are but a small part of trying to make the world a better place. That is the entire aim of The Everett and Austin Project. I hope to meet Dan someday soon and also your neighbor’s child who has Duchenne.

      Reply
  3. Ellen J. Zellner

    I empathize with Paul and his struggle to help his sons and the helpless feeling we parents of children with disabilities share. My son has a disease called ” Marfan Syndrome” which can be fatal if the heart is not monitored by a cardiologist ona regular basis. It also affects a lens in the eye, curvature of the spine, and presents with long, thin bones which should have been diagnosed at birth but doctors, including geneticists failed to diagnosis. I took him to a specialist who at first sight said ” clearly, this is a Marfan patient. He was 17 at the time. He has suffered many fractures and surgeries, almost lost him in 2005. There is little known about Marfan Syndrome but there is a foundation doing research. I am currently advocating for the autism that he has also. It is rough to tackle all this on your own, so the more support we get to fund research is critical.

    Reply
    1. Tim Gillen Post author

      I know how much this all means to you. Your passion and love is a total blessing and is a real tribute to your son Dan. I hope to meet him soon!

      Reply
  4. Sharon Chapman

    I feel so much empathy and gratitude for these parents who are going through these diseases with their child, some even willing to sell all they own to find a cure for it. As a parent of two healthy adult children, and two stepchildren with autism, I can empathize to a small degree. When the young adults reach a certain age, the support that is given in terms of community or state help diminishes, if it exists at all. Parents are on their own in terms of finding answers, as some assistance is only available to children under a certain age. We have dealt with not only the autism which is alone challenging, but the secondary factors of OCD, and mental health and employment challenges, financial challenges, and getting them to become independent as much as possible. Parents are in need of a break, so support is needed and community resources could be greatly improved. God be with those struggling with the added concern of just keeping theirs healthy and alive. May His peace and strength be yours, and may others be there for an extra pair of hands, and a shoulder to lean on and encourage you… Love,
    Sharon

    Reply
    1. Tim Gillen Post author

      Thank you so much Sharon! It is clear that you can empathize greatly with us parents of kids with DMD.

      Your support and love is much appreciated as we try to bring Christ’s love and care to Paul and his kids and others like them in abject poverty.

      Thank you for aching to help them with me πŸ˜ŠπŸ™

      In His love,
      Tim

      Reply
  5. Celia

    This story is heart wrenching, my heart goes out to these children and the parents experiencing this ordeal and who are In dire need of every assistance. We must continue to show our love through our prayers and our giving. We
    Ref Jer 33:3

    Reply
    1. Tim Gillen Post author

      Amen Celia. Thank you so much for your support and prayers. I can’t wait to go see Paul and his kids and come alongside them and bless them.

      May God direct our steps over there to Uganda. His will be done. πŸ˜ŠπŸ‘πŸΌπŸ™πŸΌ

      “…uphold the cause of the poor and the oppressed.” Psalm 82:3

      In God’s love,
      Tim

      Reply

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