Young Kerala girl with Spinal Muscular Atrophy resumes educational journey in Sharjah after undergoing gene therapy that saved her life.
In the vibrant city of Sharjah, a five-year-old girl named Aiza Mariyam is making strides in her life, defying the odds stacked against her by Spinal Muscular Atrophy Type 1 (SMA1). Aiza, described as a bright and curious learner, has embarked on her educational journey through online learning, marking her first structured education experience post-treatment.
Aiza's journey is a testament to the UAE's commitment to offering world-class care, particularly for rare and severe conditions like SMA1. At just seven months old, Aiza received a life-saving treatment, one of the most expensive drugs in the world, through the Global Managed Access Programme (GMAP) at the Medcare Royal Speciality Hospital in Al Qusais. This treatment, coupled with continuous multidisciplinary care including physiotherapy, neurology, pulmonology, and nutritional checkups, has significantly improved Aiza's health and quality of life.
The family of Aiza Mariyam, Indian expats living in the UAE, have faced their fair share of uncertainties due to her condition. However, they have found solace in the UAE's generous healthcare system and charitable institutions that provided Aiza's treatments at no cost. Aiza's parents, Naeema and Hyder, are also SMA carriers and lost their first child to the same condition.
The family's story underscores the transformative power of medical advances and supportive programs. They emphasise that these changes are rewriting the stories for SMA children and that there are people and institutions out there willing to help.
Aiza's early life was filled with therapy sessions and medical appointments, but her parents have managed to build a routine that allows her to live a happy and healthy life. They opted for virtual learning to protect her vulnerable lungs from infections. Despite the challenges, Naeema expressed hope that Aiza might start big school the following academic year.
The family's case was referred to Dr. Vivek Mundada, a paediatric neurologist at Medcare Royal Speciality Hospital. The UAE's healthcare environment has been responsive and supportive for their family's SMA treatment needs.
Indian expat families in Dubai and Sharjah have generally experienced similar success stories. For instance, in Dubai, the Al Jalila Children’s Hospital has administered over 100 SMA treatments since 2020, demonstrating the UAE's commitment to offering world-class care.
Parents often benefit from the UAE’s generous healthcare system, charitable institutions, and dedicated healthcare professionals who facilitate navigating programs like GMAP and government or charity-funded support for expensive treatments. Accessing such treatments requires timely diagnosis, referral to specialists aware of these programs, and collaboration with healthcare providers.
The experience is one of gratitude coupled with the challenges of managing a rare and severe condition, but overall, Indian expat families have found the UAE’s healthcare environment responsive and supportive for their children's SMA treatment needs.
In conclusion, Indian expat parents in Dubai and Sharjah have successfully obtained lifesaving SMA Type 1 treatments through GMAP and UAE support programs, with help from compassionate medical teams and charitable efforts, resulting in improved health outcomes and ongoing multidisciplinary care for their children.
- Aiza Mariyam's journey, marked by continual education through online learning and multidisciplinary care, is a testament to the significant impact of health-and-wellness services and education-and-self-development programs on her life.
- The family's successful acquisition of a life-saving treatment for their daughter's SMA1 through the Global Managed Access Programme (GMAP) demonstrates the UAE's commitment to the science of medicine and the importance of making it accessible for all residents.
- With improved health, Aiza's parents, Naeema and Hyder, emphasize the crucial role of mental-health services in managing daily life challenges and maintaining personal-growth opportunities for their daughter.
- The family's ongoing nutrition checkups underscore the UAE's investment in the field of nutrition and emphasize the importance of maintaining balanced health in fitness-and-exercise activities.
- The UAE's healthcare institutions like Medcare Royal Speciality Hospital and Al Jalila Children's Hospital have played significant roles in advancing science, particularly in the field of rare and severe conditions like SMA, and their efforts have significantly improved the lives of children and their families.
- The general success stories of Indian expat families in obtaining lifesaving treatments for SMA Type 1 give hope to many families, demonstrating that through learning, collaboration, and help from supportive institutions and professionals, the landscape of education, career, and health outcomes can be transformed.
