From hospital to classroom: Emirati girl defies odds in 10-year fight for life in UAE

Abu Dhabi: An Emirati girl born with life-threatening spinal muscular atrophy (SMA) type 1 has defied all odds to keep her dream of going to school alive after 10 years in the hospital.

Since birth, Amna has endured significant challenges because of her rare and severe genetic condition that affects breathing, movement, swallowing, and muscle strength. Without life-sustaining support, children with this condition typically don’t survive past their second birthday.

Amna’s parents first learned about her condition when she was just four months old. Despite seeking treatment at several hospitals, her condition showed little improvement.

“Initially, I was told that we might lose hope for her survival,” her father told Gulf News.

Amna’s journey took a positive turn with the support of M42’s Amana Healthcare in Abu Dhabi, where she has lived since 2015. Under the care of a multidisciplinary team, Amna celebrated her 11th birthday, marking significant improvements in her health. Today, she eagerly awaits the day she can join school.

“My daughter has been brave since birth. Though I miss her dearly and wish she could be at home, the medical and emotional support she receives at the hospital brings us comfort. We visit her regularly, and the environment feels just like home,” he said.

Dr Mohamed Elbestawy, who has been part of Amna’s care team since she was two years old, pointed out her determination.

“When we first received her, she couldn’t talk, had weak muscles, and struggled with swallowing. She was on a mechanical ventilator. But she kept fighting. Our team worked together, and now she can move her hands and speak clearly. Children with this condition often don’t survive beyond the age of two, but Amna is now 11. She inspires us all,” Dr Elbestawy, specialist family medicine at Amana Healthcare, said.

The multidisciplinary team, including doctors, nurses, respiratory therapists, physiotherapists, and speech and language specialists, has played a crucial role in Amna’s development. Thanks to their collective efforts, Amna has regained some motor function and the ability to talk.

In addition to receiving medical treatment, patients like Amna participate in educational programmes within the facility and are taken on outings to theme parks, cinemas, shopping malls, and events. Milestones such as birthdays are celebrated with family and friends.

“Our facility is a home, not a hospital. We strive to help patients enjoy life,” Dr Elbestawy said.

Amna’s improvements were further supported by a life-saving drug provided by the Abu Dhabi government. This drug enhances the production of survival motor neuron (SMN) protein, which is deficient in children with SMA.

“She has made dramatic improvements. We hope one day she’ll be able to breathe and eat on her own, though at this point, it’s done through a tube. She’s getting better,” Dr Elbestawy noted.

Amna is now looking forward to attending school, a move she worked toward for many years.

“She can’t wait to start school. I’ve never seen her so happy,” Dr Elbestawy said.

In collaboration with the Italian International School (IIS) in Abu Dhabi, M42 is fulfilling Amna’s dream of attending school.

She will be accompanied by two hospital nurses who will ensure a safe and nurturing environment for her. Amna has paid a visit to her school once, and was given a warm welcome by the principal and staff.

“Amna is a strong, determined girl who loves to learn and explore new things in life. I hope to see her grow into an ambitious graduate, achieving all her dreams,” her father added.