VIDEO: Student hangs onto hope as she battles rare brain disease

Madlene Cherop, 23, and her father Sergeant Richard have flown to India seven times in the past six years seeking medication in which two surgical operations, embolization and radiosurgery were done to treat her brain haemorrhage.

They all failed since the condition recurred.

But after battling the rare brain condition known as Arteriovenous Malformation (AVM) for seven years, Madlene underwent a successful surgery a week ago to remove it.

She has been in and out of the hospital, suffering from severe headaches and could sometimes pass out since 2014 when she was a student at Bishop Njenga Girls’ High School.

Doctors at Global Hospital in Bangalore, India, had told Biwott that the AVM was located in a very sensitive part of the brain and if an operation was to be done, his daughter would likely lose sight, be paralysed or even die.

The doctors then opted for a bloodless operation called embolisation, a procedure used to treat abnormal blood vessels in the brain and other parts of the body. This procedure blocks off blood flow to affected areas.

After the embolisation which was done in 2015, Cherop had to go for a medical review towards the end of the year which involved Radiosurgery.

Radiosurgery is the destruction of selected areas of tissue using radiation.

Cherop underwent embolisation again in 2016 and radiosurgery in 2017 after the doctors realised that the AVM was not cleared.

In the following years until 2019, Cherop flew to India once or twice each year with the doctors assuring the family that the AVM was clearing.

“During the review in 2019, the report we got was that the illness was clearing but the doctors warned that the condition might recur. Due to Covid-19 we could not go for another review in 2020. Fortunately, her health condition improved, and she went back to school,” said Biwott.

Cherop adhered to her medication which cost the family Sh4,000 each month.

Fortunately for the family, Biwott is employed as a public servant and has a comprehensive medical cover under NHIF that has been helping him foot most of the bills.

Two weeks ago, while in school at Riara University, Cherop called her parents complaining of a severe headache. She was flown to Eldoret and checked into Tophill Hospital.

“She was shivering and had a migraine. She was given malaria tablets because we speculated she had malaria,” said Biwott.

At Tophill Hospital, it was discovered that the AVM had ruptured and caused bleeding to the brain.

On Sunday evening Dr Florentius Koech a renowned neurosurgeon at the facility advised the family to consider an open-head surgery since the other procedures had failed, a procedure that took a team of doctors six hours to complete.

However, the surgery would involve taking risks just as doctors had warned.

Six hours after the surgery, Cherop was wheeled out of the theatre room awake and full of life.

“It is a miracle that the surgery was successful. I cannot believe that she was able to recognize us as her parents. I am so grateful to God,” said Lydia.

According to Dr Florentius Koech, an AVM is a very rare condition that has no known cause and can be congenital.

He says that embolisation or Radio Surgery procedures that are mostly done abroad can be used to treat the condition.

“For Cherop’s case, the AVM was deep-seated on the right side of the brain and had caused large blood clotting. The operation was risky as the AVM had grown to approximately 7cm and we had to be very careful,” said Dr Koech

Cherop is currently recuperating at the ICU ward with the doctors assuring the family that she will be able to recover fully soon.

Cherop is a fourth-year student at Riara University.