Family Tragedy: Why These Children May Not Live Up To Their 20th Birthday

Family Tragedy: Why These Children May Not Live Up To Their 20th Birthday

Family Tragedy: Why These Children May Not Live Up To Their 20th Birthday

Experts say four children: Tochukwu, 14, Ifeanyichukwu, 11, Vivian and Marvelous, born by the same parents, Mr. and Mrs. Zebulun Onyia-Eburuo, may not live long because of a genetic condition inherited from their parents, known as muscular dystrophy.

Diagnosis reveal that the type, afflicting the children, is Duchane muscular dystrophy. Muscular dystrophy has several types, depending on the part of the body under siege.

The condition has no cure while research shows that sufferers die before they attain the age of 19 or 20 years. The very lucky ones may live up to 30 years.

Due to wrong diagnosis, few cases have officially been reported in Nigeria. However, the condition is a rare disease.

Consultant Orthopaedic and Trauma Surgeon, National Orthupaedic Hospital, Igbobi, Lagos, Dr. Babalola Olatunji, speaking on the prevalence rate of the disease, said, "We have to appreciate the fact that one out of 3,500 live births usually has it. But, remember it is more commom for male population. We’re talking about one out of 3,500 male birth. For female-births, you multiply that by two, that’s about one in 7,000 live births.

"These are the characteristics: by five years, it starts manifesting, ten years later they’re found on wheelchairs. By 30 years, most of them are gone, that’s Duchane muscular dystrophy. It is more severe.

"Muscular dystrophy is a group of muscle diseases that weaken the musculoskeletal system and hamper locomotion. Muscular dystrophies are characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissues.

"The signs and symptoms are progressive muscular wasting, poor balance, drooping eyelids, atrophy, scoliosis (curvature of the spine and the back), inability to walk, frequent falls, waddling gait, calf deformation, limited range of movement, respiratory difficulty, joint contractures."

According to experts, there is no known cure for muscular dystrophy. 

Narrating the story of his life, Onyia-Eburuo who is a painter by profession, told Daily Sun how his marriage produced five children, four males and a female. Of these, only the eldest, Prince enjoys good health. “We got married in 1992. In 1993, we had our first child, a boy, who is now 19. The youngest among them is eight years. With the exception of the oldest, all my four children are suffering from muscular dystrophy. Recalling how the children’s ill-health started, he said they were born perfectly normal and were attending schools when all of a sudden, the condition began to manifest in his second son, Tochukwu in 2006.

"So we started treating him, carrying him up and down; here and there, from one hospital to another without getting any result. After sometime, we started noticing the problem in the other children. And began taking them to hospitals. We went to Isolo General Hospital,Lagos, then, to National Orthopaedic Hospital,Igbobi,Lagos and Lagos University Teaching Hospital(LUTH) without getting any solution because the disease has no cure.

"We consulted some religious and spiritual homes for help. We also tried alternative therapy. At some point, we started going to churches and so on. Till date, there was no solution. Instead, their conditions just got worse, deteriorating by the minute."

He continued: “We have also tried the native way. When tribulations like this come, no parent would just sit, fold his hands and watch his child die just like that. Not even where it affects just a child, let alone my case, it is not just one, not even two, nor three, but, four of my children being diagnosed of this same ailment. Somebody was treating them with herbs.Initially, he thought it was stroke. So he was giving them herbal treatment meant for stroke. But he later told us it was not stroke and stopped the treatment."

The traumatised father said, "Initially, I did not understand what they said it is. According to the doctors and surgeons, they called it Duchane muscular dystrophy and said the thing is destroying their muscles. If you see them now, they cannot lift their hands and legs. So, it has become practically impossible for any four of them to lift himself or herself up. So they just sit or lie at a spot."

Onyia-Eburuo said his children’s failing health has at the moment, stalled their education. "As their muscles get eaten up by this disorder, within a short time, they are not able to do anything by themselves because they can’t even lift an arm let alone their bodies. So, they have all stopped going to school. The four of them are at home, always sitting or just lying down at a place.

"Initially, we were forcing them to go to school. But as their conditions got worse that they could not get up by themselves, we had to let them be. This is because we have to carry them to the toilet to urinate or defaecate whenever any of them wants to. And the terrible thing about it all is that you have to be there to hold them so they won’t fall off the water closet. We brush their teeth, bathe and feed them, put on their clothes, even fetch water and help them drink the water.

He explained that despite all hospital visitations, the children have not received any form of treatment. Reason is that there is no known cure for Duchene muscular dystrophy.

"Infact, there has never been any good treatment since 2006 we first noticed this problem in Tochukwu. What we have been asked to do is run one test or the other. No form of drug whatsoever has been prescribed for them. I just can’t understand. It’s been test, test and tests. We go for one, they suggest another and nothing is done. When the doctors find out they cannot be of any help to us, they refer us to another hospital. The hospital will again, recommend other tests which we also went for. Yet, the story remains the same.

"It was in our search for a hospital, where perhaps, they can even give us something to straighten their bodies that we then went to private hospital which was our last point of call. This was after we’d gone to Isolo General Hospital, then Igbobi and LUTH and nothing came out of these visits. At Igbobi, sometimes, they asked them to do exercise which was absolutely difficult for them to do. That was the only therapy they were giving to them. No drug has ever been administered to them.

Asked if any form of corrective surgery has been recommended, he said none has been suggested, adding that, "if any hospital exists anywhere in Nigeria or overseas, that is capable of providing cure for my children, I have no idea."

Speaking on family history, Onyia-Eburue dismissed any trace of the disease in both families joined by marriage. His words: "There’s no history of such in my family. And none in my wife’s family, the sickness does not run in the two families."

Available research indicates that affected victims die by their 19th or 20th birthday or before they turn 30.

Naturally, this couple presently are overwhelmed by the thought of losing four of their children. Eburuo’s worries are not all about his children’s health challenges. He narrated that the suggestions proffered by people around him left him more worried.

"The terrible state my children are in now has scared away all our friends and relatives. Even as science has identified what their problem is, many people find it difficult to accept why or how the four of them could be affected. And because of the plight my wife and I have been going through and the untold difficulty we have been through, a lot of them have suggested that we feed then with poison and let them go."

According to him, his father and mother died at age 90 and 133 years respectively. "The same also applies to my uncles. They all died in good old ages. As for my wife, her mother is still living but her father is late. He also died at a very ripe age of 90 or 90 plus. We never experienced something like this. It is completely strange."

Since it is established that children affected by this condition usually die before age 20, you then begin to wonder aloud and feel the pulse of Mr. and Mrs. Onyia-Eburuo, if a time comes, and death begins to pick, one after another, these four precious lives.

The helpless father said, "When that happens," even though he shivers at the mere thought of it, "I will only take solace in the fact that God’s Will reigns supreme.

"I don’t have any choice but to accept it as my fate. I don’t have any option. I can’t fight God. This is why we have come to call on the medical world, physicians and researchers to rally to our aid and see what could be done to avert this imminent terror. Because it’s going to be terrifying and heart-rending for any couple to watch helplessly and their four children die just like that."

 

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