Friday 26 June 2015

Muscular dystrophy children in Kenya strive for hope

MD IS HARD TO PREVENT AND PARENTS FOUND TO BE HAVING
THE GENE ARE ALWAYS ADVISED AGAINST HAVING KIDS.

ELDORET (Xinhua) -- All parents feel passionate about their child. They would do anything and will never stop to believe in their child.
With that kind of feeling no expectant mother would think of having an abnormal or disabled child like developing diseases such as muscular dystrophy.

Muscular dystrophy (MD) is a genetic disorder that gradually weakens the body’s muscles. It’s caused by incorrect or missing genetic information that prevents the body from making the proteins needed to build and maintain healthy muscles.

Many children with muscular dystrophy follow a normal pattern of development during their first few years of life, but in time common symptoms begin to appear.
A child who has MD may start to stumble, waddle, walk on the toes without the heels hitting the floor and may start struggling to get up from a sitting position.

Anthony Kahinga and Duncan Dungere are brothers, who have lived in Kimumu Children’s Home in Sinai Eldoret, western Kenya, for the last seven years.
Kahinga and Dungere were given birth by a single mother, at Munyaka village in Eldoret. The now 15 and 10 years old children respectively were born normal without any disability. Both their mother and grandmother worked tirelessly to see them through school.
At the age of 8, Kahinga started developing weak limbs which deteriorated day after day. Shortly after, it was followed by his left leg, which developed paralysis and could not carry him around.

His mother took him from one hospital to another, but due to lack of funds, Kahinga was unable to get proper medication, and the mother did not get to know the cause of his sudden disability.
According to their new found guardian Obadiah Karuru, who also teams up as the founder of their new home, Kiplombe People Living with Aids (KIPLWAS), the boy’s mother got fed up after a series of trials and abandoned the boys to the care of their grandmother.
“They soon became a burden to her as she found it hard providing their daily meal,” he said, “She then decided to look for help from her neighbors who advised her to bring them to the home.”

Karuru is a 46-year-old father of 8, who has lived with HIV virus for the past 10 years. He fought so hard to do away with stigma in his life and when he finally did he felt it would be better to help other patients accept their status.
He embarked on an HIV awareness journey that saw him care for the HIV orphaned children more, hence the interest of accommodating and giving them their right to education.
Karuru turned his Kimumu house to a children’s home before raising funds to expand it. It was initially a home for the HIV orphaned children, but also opened doors for Dungere and Kahinga after seeing their suffering and their need for care and protection. He has since begun a school and has given hope to more than 200 children.

“I first admitted Kahinga into the school as he commuted from his grandmother’s house, where I catered for his daily transportation to and from school,” He said.
“That did not offer much help to them as getting their daily meal was still a big problem to their custodian,” he said.
As time went by, Karuru felt the children needed more attention than just the transport, meals and school. He felt they needed more care and protection. He therefore talked to their custodian, and finally admitted them permanently into the home.

“The day I admitted them into the home is the last day I saw their grandmother and relatives,” said Karuru, during an interview.
He took Kahinga’s sudden disability as a normal physical challenge and never imagined that it could get serious, or that it could be genetic as it later turned out.
At the age of 8, the younger one of the two boys Dungere also started developing similar symptoms as seen in his elder brother.

Luckily for him, it happened at a time when the first bone surgery hospital in Kenya, St Luke’s Orthopedics and Trauma Hospital was opened in Eldoret.
He sought medical help at the hospital, which confirmed that the boys were suffering from muscular dystrophy. He was advised that the disorder was genetic and that it had no cure except for therapy.
Karuru kept to weekly therapy sessions for the brothers at a cost of 5.85 U.S. dollars for each. He has committed himself to ensuring that the boys receive the therapies despite their financial implications on him.
Dr. Lelei Kibor, a specialist orthopedic surgeon at St. Lukes Orthopedics and Trauma Hospital is handling Kahinga and Dungere’s cases.
He explained that there are several major forms of MD, which can affect the muscles to varying degrees.


1 comment:

  1. He said there are cases where MD starts causing muscle problems in infancy, while in others the symptoms do not appear until adulthood. He added in most cases, MD manifests at the age of 6.
    Lelei said there is no cure for MD, and that the highest age ever attained by an MD patient is 25 years. He said MD is a genetic dysfunction, which hardly affects women although they are always the main carriers.
    “I have since handled five children in Uasin Gishu County suffering from MD, two have since passed on but the rest live on frequent physical therapy,” He said.

    MD, as we find out, is one of the most stressful conditions. It has seen most adults rendered helpless.
    It leads to lack of proper hygiene, interferes with the children’s education, causes loneliness when friends keep their distance and has rendered most mothers jobless as they step out of work to nurse their children.

    MD is hard to prevent and parents found to be having the gene are always advised against having kids.
    Kahinga and Dungere want to be a judge and an engineer respectively. All they can do is pray for help.
    For now, they are happy in their new found home. Karuru, their guardian, hopes to see these children live their dreams and appeals for support from well wishers to be able to take them for their weekly physical therapies.

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