Abu Dhabi: Doctors in Abu Dhabi have facilitated a young Emirati girls afflicted with a rare genetic spinal disorder, who can now breathe on her own and feed independently.
Afra Humaid Yousef Alblooshi was only three months old when she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a genetic neuromuscular disorder that affects the nerve cells which voluntary muscles. Without treatment, symptoms include worsening muscle weakness and poor muscle tone, and can result in feeding and breathing problems.
Alblooshi’s treatment was undertaken by facilities under the Abu Dhabi Health Services Company (Seha) network, with the young girl becoming one of the first patients in the world to receive a revolutionary gene therapy called Zolgensma. The therapy was administered at the Sheikh Khalifa Medical City, and Alblooshi was referred to the Salma Children’s Rehabilitation Hospital in the capital in July 2021.
At the time, Alblooshi was unable to sit, play, swallow or breath independently. Her CHOP-intend score, the standardised assessment to score the functional level of SMA, was low at 26/64. But under the care and compassion of the team at Salma, Alblooshi began to thrive.
“At Salma, we just want children to get better as soon as possible and live normal and healthy lives. With Alblooshi, the team worked meticulously to design medical and therapeutic programs that would accelerate her recovery,” said Dr Ashraf Elbatal, clinical lead specialist at Salma’s paediatric intensive care unit.
“Alblooshi’s physiotherapist worked on improving and monitoring her muscle power and head control. We had an occupational therapist who helped her in achieving daily activities like brushing teeth or eating on her own. Our speech and language pathologist tailored programmes that focused on her difficulty swallowing, conducted play therapy, and worked on functional oral feeds. Alblooshi was also looked after by a special needs educator who followed her developmental milestones daily and curated programs to encourage social interactions. And lastly, Salma’s respiratory therapist along with our consultant paediatricians gradually weaned her off the ventilator. She was given comprehensive care that has resulted in much improvement,” added Marjolein Oosterheert, therapy lead at Salma.
Following the 360-degree rehabilitation at Salma, Alblooshi can now breathe on her own, sit without support, and walk with the help of a walker. She is also enrolled in a regular school curriculum, has an optimal CHOP-intend score (64/64), and can communicate, swallow, and oral feed independently.
“To see your child unable to even communicate is a challenging thing for any parent. We are so grateful to the entire team at Seha, including SKMC and Salma Children’s Rehabilitation Hospital, who rallied behind our baby to ensure she becomes better and journey towards living a relatively normal life. Watching her today, fills my heart with joy and for these moments, I wholeheartedly thank everyone across the Seha network,” Alnblooshi’s mother said.
“One of the main advantages of being a part of UAE’s largest health care network is that we can provide integrated and coordinated services throughout the entire treatment stages in order to meet the comprehensive health care needs of our patients. Especially for children, SKMC and Salma work closely together and offer excellent quality of care. In Alblooshi’s case, we are proud to have such an impact on a child’s life with our highly specialised and comprehensive rehabilitation at Salma, after SKMC’s highly experienced teams administered this state-of-the-art treatment. Great collaboration is the key component that has resulted in a remarkable patient outcome here. At Seha, we shall continue to strengthen our network integration and provide an even wider range of services to our patients,” added Philipp Mielenz, chief executive officer at Salma.
Salma is the only rehabilitation and long-term care provider for the Seha network. It provides a holistic and multi-disciplinary approach to health care services, with professionals working as a team to provide exceptional care and rehabilitative services to its patients.
There are currently three Salma facilities in Abu Dhabi Emirate. Salma Children’s Rehabilitation Hospital is a flagship facility in the capital with 83 beds. Salma Rehabilitation Hospital — SKMC provides personalised long-term care and rehabilitation services for adults within SKMC, with a 52-bed capacity. In addition, Salma Rehabilitation Hospital — Al Ain offers comprehensive long-term care and rehabilitation services for adults and children, with a 36-bed capacity.