Sandton, Johannesburg — Arav Singh (15), from Lonehill in Sandton, has spent the past five years battling a rare and aggressive brain tumour known as craniopharyngioma. His family is now appealing for public support to help him access specialised international treatment that could improve his quality of life after years of surgeries, complications and neurological damage.
Diagnosed in April 2021 with a tumour measuring 13cm — one of the largest cases doctors in South Africa had encountered — Arav’s condition has led to multiple surgeries, complications and a dramatic decline in his quality of life.
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A crowdfunding campaign has now been launched to raise R1 million to help the family pursue specialised treatment options overseas that are currently not available locally.
A Diagnosis That Changed Everything
Arav’s symptoms first appeared years earlier when he experienced frequent unexplained vomiting, initially believed to be related to gastric reflux.
But in April 2021, scans at Fourways Hospital revealed the true cause, a massive craniopharyngioma pressing against critical areas of his brain.
The tumour had already caused severe damage.
It destroyed three of the four optic nerves in his optic chiasm, leaving Arav blind in his right eye and with only partial peripheral vision in his left.
Just weeks after undergoing a craniotomy at Netcare Unitas Hospital, Arav suffered an ischemic stroke, beginning a long and difficult recovery journey involving physiotherapy, occupational therapy and speech therapy.
Years of Surgeries and Complications
Over the next several years, Arav endured a complex medical journey involving multiple procedures and treatments.
He underwent 30 rounds of radiation therapy, additional brain surgeries and procedures to manage complications including hydrocephalus, a dangerous buildup of fluid in the brain.
Doctors implanted devices including an Ommaya reservoir and later a VP shunt to help manage the pressure and fluid buildup.
Along the way, Arav was also diagnosed with epilepsy.
Despite periods of stability, the tumour has continued to return and grow.
A January 2026 MRI revealed further tumour growth, with the cystic component measuring 6cm and the solid component reaching 3.2cm. Doctors warned that smaller “seed-like” tumours could continue developing.
A Childhood Changed
The illness has dramatically altered Arav’s life.
A child who once enjoyed cricket, swimming and reading now lives with significant physical and cognitive challenges.
He is hemiplegic, has limited use of his right hand, and struggles with reading and memory due to neurological damage caused by the tumour and repeated procedures.
His daily routine now revolves around therapy, medication and strict medical management.
“Arav has a strict daily routine that involves a restricted diet and daily therapy including biokinetics, speech therapy, occupational therapy, physiotherapy or visits to a psychologist,” his family explains.
“As a stroke survivor, his days are busy and exhausting.”
The tumour’s impact on his pituitary gland has created further complications.
“Basic pituitary functions are now managed with artificial hormones — twenty-three pills a day and an injected growth hormone,” they say. “This is the result of panhypopituitarism after his pituitary gland was damaged by the tumour.”
Simple childhood activities have become impossible.
“Arav no longer participates in sports and he is unable to read, which was once something he loved,” his family shares.
“Before the diagnosis he was busy reading Book 4 of the Harry Potter series. His vision and memory have taken that away from him.”
Even daily movement now requires support.
“Due to his physical limitations, all his activities and movements are monitored or assisted at home.”
Despite these challenges, Arav’s outlook remains remarkable.
“He is a positive child and takes on each day with vigour,” his family says.
“Arav has always expressed his emotions and shows deep appreciation for the people and world around him. He is very sensitive to the struggles of others.”
Searching for Hope Beyond South Africa
With treatment options in South Africa now limited, the family has begun consulting with specialists abroad.
They are currently working with Dr Ravi Ranjan and his team at Fortis Hospital in Delhi, India, who are reviewing Arav’s MRI scans and medical history.
Arav’s medical team in South Africa has supported the family’s decision to explore international care.
“Arav’s endocrinologist, ophthalmologist and neurologist have expressed great support for our efforts to pursue international treatment,” the family explains.
“Discussions often centre around the advanced technological expertise available in countries like India and the benefits of a holistic approach to managing a complex condition like Arav’s.”
The proposed treatment plan in India may involve several advanced procedures.
Initial discussions suggest that removal or resection of the tumour’s cystic and solid components may be required, potentially through surgery or radiation.
Specialists have also proposed additional therapies including CAR-T cell therapy and stem cell treatment, which have shown promising results for patients with similar conditions.
A Chance at a Better Quality of Life
For Arav’s family, the goal of pursuing treatment overseas is not simply survival — but the possibility of improving their son’s daily life.
“The sole purpose of this trip is to explore every legitimate therapy that can improve Arav’s quality of life,” they explain.
They hope the treatment could stabilise or shrink the tumour, relieve pressure caused by hydrocephalus, improve optic nerve function and reduce his dependence on medication.
“We hope our once active child will be able to find new avenues that interest him, improve his physical and academic abilities, and become the best version of himself.”
A Family Refusing to Give Up
After five years of surgeries, therapy and relentless medical care, the Singh family says their reality still feels difficult to accept.
“Our child’s diagnosis still feels surreal,” they share.
“We are yet to accept that our funny, smart, active child has been robbed of a full and adventurous life.”
Their daily life revolves around caring for Arav while also supporting his younger brother.
“A day in our lives simply cannot be captured in a sentence,” they say.
“It is a 24-hour schedule that no fifteen-year-old should have, no trips to the mall with friends, no cricket, no normal social interaction.”
Despite the hardship, the family remains determined to keep fighting.
“Your support of this campaign provides a literal route to hope, a chance for Arav to be freed from this disease and to feel like he is no different from other children his age.”
They also hope Arav’s story raises awareness about the rare disease affecting their son.
“Craniopharyngioma is not classified as metastatic cancer because it grows slowly, but it silently robs children of the chance to live a good quality life.”
The Singh family says they are deeply grateful to everyone who has already supported their campaign.
“We are appreciative of every person who has contributed so far and shared the link. Thank you.”
To support Arav’s campaign, visit view the campaign.
