Kidney transplant survivor triumphs over disease to top KCSE against odds

Anne Brigit Alande, 19, emerged as one of the top KCSE students last year, an extraordinary achievement she earned at Kaga Girls High School in Meru County.

Her outstanding performance in the national examination was all the more remarkable because she had battled a life-threatening health condition that tested her resilience, courage, and faith daily, as her parents, Jectone Oyugi and Rhoda Akech, recounted.

Born in Nairobi, Brigit was a lively, inquisitive, and bright child, yet she faced intermittent health challenges from an early age. Doctors discovered she had congenitally small kidneys, warning that her organs might not sustain her beyond childhood, casting a shadow over her early years.

Despite this daunting prognosis, Oyugi, a pastor and accountant, says their daughter led a relatively normal life, pursuing her education with determination and a quiet strength, until 2017, when her condition deteriorated and she was diagnosed with end-stage kidney disease, prompting the start of rigorous haemodialysis treatments.

From her early days at St George’s Primary School in Nairobi, through the family’s relocation to Kampala, Uganda, and later Nanyuki, Brigit demonstrated remarkable fortitude and adaptability, balancing her health struggles with her studies and a growing determination to excel, inspiring everyone around her with her perseverance and optimism.

In 2017, shortly after starting boarding school, Brigit began noticing subtle changes in her gait, which gradually worsened into severe joint and foot pain, making daily movement increasingly difficult and painful.

“During a school holiday, we sought medical attention from a paediatrician in Nanyuki. After thorough diagnostic tests, she was diagnosed with chronic kidney disease and referred to a nephrologist at Aga Khan Hospital in Nairobi. Remarkably, this was the same specialist who had assessed Brigit years earlier and diagnosed her with congenitally small kidneys,” he recounted.

“He confirmed that her condition had progressed to end-stage kidney disease and was astonished, even shocked, that she was still alive,” he added.

Following this life-altering diagnosis, Brigit was immediately placed on haemodialysis, initially twice weekly, sometimes three, alongside daily antihypertensive medication, a grueling routine that tested her endurance, patience, and spirit.

Today, she lives with a single functioning kidney, the gift of a successful transplant donated by her maternal uncle, George Okeyo, performed in India on September 30, 2019.

“She is now on a strict post-transplant medication regimen, taking five different types of medicine daily, divided into morning and evening doses. Two of these medicines are difficult to access locally and often prohibitively expensive, sometimes one tablet costing up to Sh300, yet she requires two daily,” Oyugi told Health and Science.

Inpatient cover

The family has a shared health insurance plan through an employer, subject to congenital and pre-existing conditions. “Despite these constraints, the insurance cover has been valuable in supporting Brigit’s outpatient care and contributing significantly to any inpatient procedures. However, being a shared family cover, we do not get her medications through the health insurance, as this would deplete the outpatient limit in just a couple of months , leaving other family members exposed should there be a need,” he said.

The impact of Brigit’s illness has been profound, as she endured severe pain, repeated convulsions, some occurring in public spaces, significant physical limitations, and prolonged hospitalisations.

Oyugi says her growth was stunted, and she developed skeletal deformities that required corrective osteotomy surgery. “At various stages, she relied on caregivers for mobility, at some point used a wheelchair and crutches, and missed nearly two years of school. This separation from her peers deeply affected her self-esteem, particularly as her older brother, currently in university third year, progressed ahead academically, even though they were just one year apart in their schooling,” he says.

Now overcoming some hurdles and doing everything they can to support Brigit, who Kaga Girls’ Chief Principal Eunice Maeke described as a model student and who aspires to be a nephrologist, Oyugi thanked the doctors and everyone who supported the girl when finances strained the family.

“The initial plan was to carry out the kidney transplant at Aga Khan Hospital, Nairobi, at an estimated cost of Sh2.5 million. Through generous support from the Church, family, friends, our employers and colleagues, this amount was successfully raised. However, as we went through further testing, Brigit developed a severe infection and was admitted to ICU/HDU care. Within two weeks, nearly all the funds raised were exhausted in stabilising her. She also suffered a hip slip/dislocation resulting from the infection. Within a month, the entire transplant fund had been depleted, forcing us to again mobilise resources, including taking loans.”

He said seeking a second medical opinion from a senior nephrologist at Kenyatta National Hospital proved pivotal.

“With great empathy, the doctor facilitated a referral to India and provided all the necessary documentation for the Ministry of Health, other government departments, regulatory authorities, and the Indian Embassy — enabling us to travel to India for the transplant.”

Family and friends support

“Despite the difficulty of fundraising again, we received overwhelming support from our family, Alive in Christ Gospel Ministries and its affiliates, friends, employers, colleagues and well-wishers. It was as if God instructed everyone who heard our story to support us urgently and generously. We remain forever grateful. Within a day of Brigit’s admission at Medanta — The Medicity in Gurgaon, India, approximately Sh5.4 million (US$42,000) had been raised to cover local running costs, treatment, subsistence, accommodation, daily tests, dialysis, medication and the transplant procedure. In total, the treatment, travel, and associated costs amounted to approximately Sh5.8 million (US$45,000).”

Brigit is currently doing well and leading a largely normal life. Although she has a limp, her quality of life has improved significantly compared with the period of exhausting dialysis, frequent hospitalisation, recurrent infections, convulsions and immobility.

“Overall, her health has stabilised, and she continues to make positive progress,” Oyugi summed.

Brigit said, “When I was doing dialysis at the time, I noticed I was the only child in that unit. I told myself I would never want a child to go through what I have been through. I decided that I want to be a nephrologist.”