Photos: Autistic youth's balloon decorations not enough to sustain family in Dubai
Dhiren's mum Neelam has been struggling for several years to make ends meet and adding to her woes, she lost her job a few months ago.
A student of Rashid Centre for People of Determination, 21-year-old Dhiren Bhatia's love for balloons is evident in any interaction you have with him.
An expert at making balloon arches - a self-taught skill - the high-functioning autistic youth with Asperger's syndrome is striving hard to support his single mum, amid the Covid-19 pandemic.
Dhiren's mum Neelam has been struggling for several years to make ends meet and adding to her woes, she lost her job a few months ago. The income from Dhiren's balloon arches - their sole source now - is barely enough to cover their daily expenses, let alone Dhiren's medical expenses and Rashid centre fees.
Genetic disorder complicates matters
When Dhiren was four-and-half-years-old, he was diagnosed with genetic disorder, Neurofibromatosis type 1 (NF1) - a disorder that can affect multiple systems of the body.
According to a report from Dr Gururaj Aithala, a consultant paediatrician at Latifa Hospital for Women and Children, Dhiren has NF1 with a developmental delay, attention deficit hyperactivity disorder, autism spectrum disorder, learning disabilities, and optic glioma.
NF1 is characterised by the presence of skin changes, such as café-au-lait spots (light brown patches on the skin), and freckles in the armpits or groin area, said Dr Debora Garozzo, a consultant peripheral nerve surgeon at the Neuro Spinal Hospital in Dubai, who has consulted with Dhiren.
"What makes NF1 a truly unique disorder is that it causes the growth of small tumours all over the patient's body. In most cases, patients with NF1 have thousands of tumours, or neurofibromas, which are non-cancerous tumours that are usually located on or just under the skin," Dr Garozzo told Khaleej Times.
Affects one in 4,000 worldwide
The condition affects at least one in 3,000 to 4,000 people worldwide. "About 50 per cent of the cases genetically inherit the condition and the remaining 50 per cent have spontaneous mutations. Forty to 70 per cent of the cases also develop learning disabilities, psychiatric problems among several other symptoms," she explained.
In some cases, the tumours, over time, also turn cancerous. "There is no cure for NF1. Patients must be monitored on a life-long basis by undergoing a full-body MRI scan every year. In several Western countries, NF1 patients can go to referral clinics and depending on the condition of the tumours, they can undergo treatment. Some NF1 patients die young and some live up to old age," added Dr Garozzo. For cancerous tumours, surgery may be combined with other treatments for cancer, she added.
In Dhiren's case, he was diagnosed with optic glioma, a condition common with NF1, when he turned four-and-a-half. "In the first MRI, we did for his brain, a developmental paediatrician at Latifa Hospital had informed us that he has tumours that were growing along the nerve leading from the eye to the brain - or optic glioma," explained Neelam.
Medical condition gets complicated over the years
Since genetic conditions are not covered under medical insurance, Neelam has not been able to get regular MRI checks for Dhiren. "In 2016, Dhiren started complaining of knee pain. And in November 2018, he began developing painful lumps all over his body. He would tell me that balloons are growing all over my body," said Neelam.
She consulted with Dr Garozzo in November 2018, who informed her that Dhiren has bulky tumours in his knees and his thoracic spinal area that was causing him pain.
"Last year, a charitable organisation paid for his screening and from our study, it was found that he needs to undergo a surgery for the tumour in his knees," explained Dr Garozzo. "I'm afraid these tumours may have become bigger or might undergo malignant transformation. He needs to undergo an immediate MRI to check the status of these tumours," she added.
Family suffers severe financial constraints
Due to financial constraints, Neelam has been unable to pay for his recent check-ups. Well-known social worker Pam Gouri, a Dubai-based social worker who has known Neelam since 2013, has been providing mother and son with food and other medical support.
"She (Neelam) has been in a bad shape since 2013. It is not easy to raise a special needs child, and she has been through a lot. I meet with her several times a week to drop food and other supplies," said Gouri.
Since her job loss, Neelam's former firm has given her until November 14 to stay in the company accommodation. "I don't have a family I can go back to India. My parents died a few years ago and I don't receive any support from my ex-husband. After November, I fear I am going to be homeless. The last time Dhiren went to India, he got dengue and we had to stay there for two months. Right now, I need a job, and support from a sponsor to help treat Dhiren," said Neelam.
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