Arav Singh is fighting an aggressive brain tumour known as craniopharyngioma.
Image: Supplied
In a heart-wrenching battle against a rare and aggressive brain tumour, 15-year-old Arav Singh from Johannesburg faces profound challenges that have dramatically reshaped his young life.
Singh is fighting an aggressive brain tumour known as craniopharyngioma.
Diagnosed in April 2021 with a 13cm tumour, the 15-year-old has faced an uphill struggle fraught with multiple surgeries, ongoing complications, and significant neurological damage.
The Singh family, formerly from Durban and now based in Lonehill in Johannesburg, has launched a crowdfunding campaign with a goal of R1 million, seeking public support to access specialised international treatment that could improve Arav's quality of life.
The young teen's ordeal began when he started experiencing unexplained vomiting, a symptom initially diagnosed as gastric reflux. A scan later revealed a massive craniopharyngioma pressing against critical areas of his brain.
His mum, Vanidha, said his diagnosis occurred during the height of Covid.
"It was such a scary time as we were not allowed to stay with him in the hospital. He was three weeks in the ICU. We could see the number of people dying in the hospital and were terrified he would get Covid," she said.
She said 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 he suffered an ischemic stroke, beginning a long and difficult recovery journey involving physiotherapy, occupational therapy and speech therapy.
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.
A scan in January revealed further tumour growth.
As a stroke survivor, his days are spent in extensive medical management while grappling with the debilitating aftereffects of the tumour and multiple procedures. With his pituitary gland damaged, Arav depends on artificial hormones, taking as many as 23 pills a day along with an injected growth hormone.
“The cyst and tumour are now growing faster. Arav’s endocrinologist, ophthalmologist and neurologist have expressed great support for our efforts to pursue international treatment,” said Vanidha.
“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,” she said.
With limited treatment options available in South Africa, Vanidha said they reached out to medical specialists abroad. They are currently consulting with Dr Ravi Ranjan and his team at Fortis Hospital in Delhi, India.
Singh is due to travel to India in April with his dad, Vikash.
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.
Vanidha said they have exhausted all options with doctors locally and were not prepared to watch him regress.
"We want to help him have much fulfillment and joy. He is now very forgetful, is terrified when people touch him and cannot handle loud sounds or pain like he used to," she said.
She said they decided to pursue treatment overseas to improve 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,” she said.
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.
Vanidha said her son has limited capacity to use his right hand and read and attends a school for Prevocational Curriculum, however, his short and mid term memory has regressed completely.
He once relished playing cricket, swimming, and immersing himself in books now faces significant physical and cognitive challenges.
“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. He used to love public speaking and playing sport."
She said it is hard to accept that their funny, smart, active child has been robbed of a full and adventurous life.
“It is a 24-hour schedule that no 15-year-old should have. No trips to the mall with friends, no cricket, no normal social interaction. But he trusts in his faith and remains positive,” she said.
Singh's campaign details is on https://www.backabuddy.co.za/campaign/arav-singh-our-craniopharyngioma-warrior