The glory of hope, amidst great odds

By George Orido

Gloria Chepkorir smiles as guests stream into her new classroom at Mwamba Tealand Primary School where she reported three weeks ago.

She has started the long journey of pursuing her academic dream of becoming a doctor in the private school 100 meters away from her home in Kericho.

Whilst Gloria looks smaller than other pupils at the school, she is actually much older than the children whose average age is five years. Gloria turns 10 later this year.

Gloria with her mother, Magdalene Chebet

But Gloria is a child with special needs. She has a rare medical condition called spina bifida, which is birth defect that involves the incomplete development of the spinal cord or its coverings, according to online sources. The term spina bifida comes from Latin and literally means "split" or "open" spine.

High fever

Spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo’s spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. The condition usually is detected before a baby is born and treated right away.

The causes of spina bifida are largely unknown. Some evidence suggests that genes may play a role, but in most cases there is no familial connection. A high fever during pregnancy may increase a woman’s chances of having a baby with spina bifida.

There are two types of of spina bifida: meningocele and myelomeningocele. The latter is the most severe form of the condition and most babies born with this type of the disease also have an accumulation of fluid in and around the brain.

Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

Gloria exhibits the above symptoms. She cannot walk upright and has been confined to a wheel chair since birth.

"At birth Gloria cried incessantly. We sought medical advice immediately," explains her mother Magdalene Chebet Kirui, who has the unenviable responsibility of taking care of her daughter.

Gloria was taken to various hospitals in Molo, Kericho, including the Moi Referral Hospital in Eldoret, and the Kenyatta National Hospital and the Kijabe African Inland Church Cripple Centre.

At Kijabe, Gloria underwent several operations and grafting in an attempt to enhance her spine development. She is currently implanted with a shunt machine from the head to the urinary bladder.

"I have to assist her with a catheter tube daily to help drain water

from her head and prevent a tumour that had developed as a result of her

condition," explains Gloria’s mother, adding that she attends to her every three hours.

Chebet had to resign from her job as a teacher in order to take care of Gloria and take up a green grocer’s job that is more flexible. But that switch also came with a severe pay cut.

Recurrent bills

"We have sold our assets to offset recurrent hospital bills including the family farm and livestock," Gloria’s father Joseph Kibet Kirui, a teacher at Kericho Academy, narrates.

Gloria has a special chair in the class that provides support and comfort for her learning.

Gloria with her father Joseph Kirui and sibling Victor Kipkemoi. Photos: George Orido/Standard

Gloria’s comprehensive medicare includes regular physiotherapy clinics and treatment at the Kijabe hospital.

All these have placed a major financial burden on the Kiruis. The family has been struggling with the medical bills for years and has been contemplating disposing of the remaining piece of land.

Gloria’s siblings, Mercy Chemutai, a Form 1 student and Victor Kipkemoi, who is in class 7, are both in perfect health.

But as the family struggles with the medical bills, Gloria remains their inspiration as she soldiers on.