Confined to her bed and fed through tubes into her stomach, little Mirha Faraz Qureshi has had a torrid start to life.
Her first four years living in Fujairah have been ravaged by a little-known condition that is thought to affect fewer than 100 people worldwide.
More than 7,000 rare diseases affect about about 300 million people around the globe.
Each year on the last day of February, that community comes together to talk to the public, policymakers and industry professionals about the effect the diseases have on their lives.
Spinal muscular atrophy with respiratory distress (Smard1) was not fully recognised until 1996 and is a condition rarely seen in children aged from six weeks to six months old.
Most of those with the condition do not survive the first 13 months of life.
At age 4, Mirha has already bucked that trend and the little miracle is fighting against the odds thanks to the tireless work of her parents, who told her story to mark Rare Disease Day on February 28.
“At just four months old we noticed her physical activity was not normal like other kids,” said Mirha’s father, Faraz Qureshi, 42, from Lahore in Pakistan. He lives in Fujairah with his wife Qurat Ul Ain, 29.
“We took her to Al Sharq Hospital in Fujairah for tests and the doctor noticed she was crossing her legs abnormally so we booked her in to see a neurologist.”
That was the beginning of almost two years of hospital stays in Pakistan, Fujairah, Sharjah and Dubai, as doctors performed several tests to try to diagnose her condition.
Because Mr Qureshi’s employer did not cover his family for health insurance, the bills soon piled up.
Mirha's care costs are estimated to surpass Dh1 million ($272,300), with monthly fees for her home care currently running at about Dh10,000.
The family has paid some of those costs and a special insurance plan taken out after the condition was diagnosed covered some medical fees, but that will expire soon.
The family became alarmed weeks after arriving back in the UAE from a visit to Pakistan for tests in the first year of her life.
Mirha stopped feeding and was immediately admitted to hospital as an emergency case and placed on a ventilator.
Infants with the condition experience a sudden inability to breathe owing to paralysis of the muscle that separates the abdomen from the chest cavity.
Those who survive require permanent mechanical ventilation to allow them to breathe.
She later had pneumonia diagnosed and was given only a small chance of survival.
Amazingly, after three weeks of intensive care, Mirha pulled through.
Doctors admitted the youngster to University Hospital Sharjah, where she stayed for about six months.
“It was a very tough few months, as I was working in Fujairah until 7pm and then travelling to Sharjah each day to see my daughter,” said Mr Qureshi, who works at an oil terminal.
“I was exhausted and getting by on just a few hours of sleep a night.
“When the doctors finally diagnosed her condition, we were both shocked.
“Neither of us had heard of Smard1 and there was no family history.
“It was painful and hard to accept. My wife was crying day and night.
“There is no cure and the doctors said the treatment would be lifelong. They said we had to learn to care for her at home by ourselves.”
Mr Faraz managed to obtain Daman Insurance coverage for a year of Mirha's care.
The family have been given help with her care at home in Fujairah. They have two nurses, ventilation, oxygen bags, a nebuliser, medication and suction machines to keep their daughter's breathing tubes clear. Parents of other children with rare diseases have donated home-care equipment.
Mirha must undergo an annual sleep study at Al Jalila Children’s Speciality Hospital in Dubai to diagnose any sleep disorders.
Her heart rate and breathing are also checked, along with her eye and body movements, so ventilator settings can be adjusted as she grows.
In spite of everything, Mirha continues to fight every day and her eyes continue to light up whenever she sees her family around her.
Dr Sanjay Perkar, a specialist paediatrician at Fakeeh University Hospital in Dubai Silicon Oasis, has been Mirha's doctor since she was nine months old.
“SMA itself is a rare disease, but the subtype that Mirha has is incredibly unusual,” he said.
“Her journey has been complex. We received her for about four to five months, in which time we diagnosed all her problems and then transitioned her to home-based care.
“The family has bared the significant costs themselves, a huge financial burden as Mirha requires lifetime support.”
Because Mirha’s muscles are not working, she sleeps most of the time but is prone to infections.
That has been a particular worry during the Covid-19 pandemic.
Mr Feraz hopes to raise money to pay for an electric wheelchair so he can take her outside into the fresh air.
“The family’s situation shows how important telehealth consultations are. There is no need for them to travel long distances,” said Dr Perkar.
“They were travelling from Fujairah to Dubai and by the time they reached my hospital, her oxygen cylinder was often running low.
“It could have been an emergency situation, so they face these challenges every day.”