Dubai: Two Indian couples in Dubai are currently struggling with their ailing children who are both suffering from a rare condition, the treatment for which can cost millions of dirhams.
Eight-year-old boy Arhaam and six-year-old girl Arya are both suffering from Spinal Muscular Atrophy (SMA) Type II — a rare genetic condition. The parents of both children are seeking financial help to fund their children’s treatment, which is beyond their means.
What is SMA?
SMA is a rare genetic progressive neuromuscular disease. It is part of a group of hereditary diseases that gradually destroys the motor neurons — nerve cells in the brain stem and spinal cord that control essential skeletal and muscle movements that control actions such as speaking, walking, breathing and swallowing. A malfunction in motor neurons leads to muscle weakness and atrophy.
Syed Asgar Ali, father of Arhaam, works as a marketing executive in Dubai. He also has a daughter, Syeda Amaira Fathima, who is two years old. For the time being, Arhaam is in the Indian city of Hyderabad with his mother and sister.
Arhaam was diagnosed with SMA Type II when he was a little over a year old. “There was no medicine for this condition at that time. The doctor advised us to start physiotherapy, but it is a progressive disease and physiotherapy alone will not help,” Ali said.
Speaking of the tough situation at home, Ali added: “Children with SMA have many problems as they cannot stand and walk. They also have breathing problems. My wife and I are trying our best to take care of him and we do not want to lose hope.”
‘Loves going out’
Ali said it was hard securing school admission for his son. “The classroom was on the first floor and we needed to carry him to class. He has completed his primary education and is very intelligent. He loves going out, but the problem is that we need two people to take care of him.” Ali added that the cost of medicines can run into more than a million US dollars.
‘An impossible amount’
Ali’s concerns were echoed by another distressed parent — Astha Muthoo. Her six-year-old daughter Arya is also suffering from SMA. She is currently wheel-chair bound.
Muthoo, 35, who worked as an assistant professor in computer science engineering before Arya’s diagnosis, said she and her husband Rahul, 37, a software engineer, were trying their best to get financial help for their child’s treatment.
“There is a drug available for her condition at a local hospital, but it’s the most expensive drug in the world and costs Dh8 million, which is an impossible amount for us to afford. So, we have started a fund-raiser in India. This medicine is approved only for children who weigh less than 21kg. Arya is currently 19kg. She will probably be 21kg in about six months’ time. So, please help us reach out to people to save our little girl’s life,” Rahul said.
Muthoo said her daughter has been fighting lung collapse, heart attacks, kyphosis and scoliosis. “Arya suffers from 40 degrees of kyphosis, an increased front-to-back curve of the upper spine, and seven degrees of scoliosis, an abnormal curve of the spine. If scoliosis increases, then the bones in her rib cage can protrude into her internal organs and that can be fatal,” she added.
'A childhood taken away'
SMA has taken away Arya’s childhood, her mother said. “She worries about what will happen when I am no longer able to carry her in my lap to take her to the bathroom or to take care of her. She asks me several times if she will die like the other children with SMA. It is the last thing a mother can even think. It breaks my heart to hear Arya say this,” Muthoo added.
'Heart-breaking prognosis'
She said Arya was diagnosed with the condition when she was one year old. And ever since, life hasn’t been easy for her, as the damage to her organs has been only getting worse. “Learning that she was suffering from SMA broke us from inside. It is very heart-breaking when your doctor tells you to plan for another child when all you want in the world is to save your only child. Since 2017, Arya has fought many health complications and spent weeks in hospital. Even a simple cold would turn into pneumonia. She has issues with swallowing. Food can go into her lungs and cause infection. Her lung capacity is less. While lying down, instead of breathing in, she breathes out,” Muthoo said.
“Once she started going to school, there were multiple visits to hospital intensive care units. She was also on ventilator support. She can’t lift her hands or move her muscles. She can’t stand up even with our support. All we can do is pray for her life,” she added.
