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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