Emirati family confronts genetic disease with hope and hard work

A seven-year-old Emirati girl, Mahra Saeed Al Balushi, embodied an inspiring humanitarian story for an Emirati family after she had overcome a rare genetic disease thanks to a successful bone marrow transplant at Yas Clinic - Khalifa City, in co-operation with Abu Dhabi Stem Cells Centre.

Mahra lived a full year in isolation away from her school before returning after a long treatment journey to her classes and friends, bringing with her a small family project that she launched with the support of her mother and siblings, as a symbol of determination and hope.

Al Khaleej visited the Emirati family at their home in Al Falah area of Abu Dhabi to learn the details of their story. Mahra’s mother, Bodour Al Balushi, affirmed that the family of three children had faced a painful experience with an inherited genetic disease from which two family members suffer. They were only identified with the disease after thorough genetic testing, she added, noting that they underwent an intensive treatment phase that included prolonged isolation and a bone marrow transplant.

She explained that Mahra suffered from recurring chest infections before it was discovered that she was infected with Epstein-Barr virus, which led her to be admitted to the hospital for more than a month without any clear cause at first.

She was later forced to be isolated for a whole year away from school, as she only went to take exams in an isolated room, she said, adding that treatment forced her to isolate herself for six consecutive months, before she completed eight post-transplant months and finally returned to school.

This ordeal created the motivation for the family to launch their small project, ‘Cloud Nine’ as a social initiative that aimed to teach children the basics of work and integration into society, she said.

The idea for the project began simply during her treatment, when her daughter loved matcha and would prepare it herself at home to pass the long periods of isolation, she said.

From there, she developed a desire to turn this small experiment into a real initiative that would give children a sense of accomplishment and help them regain their self-confidence after a grueling illness, she added.

The project was not limited to matcha alone but expanded to include the production of 100 per cent natural fruit ice cream, which was served at various community initiatives and events, she said.

She emphasized that the primary goal was to engage children in group work that would instill in them the value of giving and reassure them that illness would not prevent them from being creative or participating in community service but rather could be a catalyst for transforming adversity into positive energy and new hope.

Mahra indicated that she disliked her long stays in the hospital, where she remained for nearly a full year and endured months of difficult isolation. She considered the surgery she underwent to be a pivotal moment that breathed life in her again, she said.

“I was scared when I entered the operating room, but I fought hard and managed to overcome the critical stage, so I could return to my studies, which I missed so much,” she said.

She pointed out that after her recovery, she found in the ‘Cloud Nine’ project a new space for creativity, as she used to prepare her own matcha drinks and create different recipes for burgers and desserts.

She emphasized that she looks forward to her project becoming a fully-fledged café with her own touch, giving her the opportunity to serve her community.

As for her older sister, Maryam, to whom she donated her bone marrow, she confirmed that she was initially afraid when she was told she had to donate, but she immediately agreed, saying, “Because she is my sister, it was only natural that I save her life.”

She noted that she felt proud after the successful operation and was ready to repeat the experience again to save her brother Abdullah, who is preparing to undergo a bone marrow transplant soon.

She added that she was part of the family project, helping prepare and sell the products with her siblings, and that ‘Cloud Nine’ was no longer just a small project, but rather a space that embodied family unity and solidarity.

Abdullah, the eldest brother, explained that he was currently in the process of preparing for a bone marrow transplant, after doctors confirmed that he and his sister Maryam were compatible.

He explained that he was receiving regular treatment and was constantly following up with the medical team, but despite his health challenges, he was continuing his studies regularly and achieving high grades.

He emphasized that he was looking forward to studying software engineering and artificial intelligence in the future and that he was planing to expand the family project through digital platforms and transform ‘Cloud Nine’ into a distinctive Emirati brand.