Living with Multiple Sclerosis: UAE-based expat says, 'Everyone deserves to thrive'

Empowerment and inclusion advocate Marilena De Costa finds inspiration in the metamorphosis of a butterfly; her life’s mission reflecting this transformation. Turning her personal battle with Multiple Sclerosis (MS) into a movement of inclusion and self-discovery, Marilena has dedicated nearly two decades to reshaping perspectives on disability, equity, and diversity in the UAE. “Everyone, regardless of ability, deserves the opportunity to thrive,” she says, embodying a message of strength and resilience.

“We are not always seen”

Growing up in southern Italy in a middle-class family, Marilena was drawn to service from a young age. Her aunt, who lived with MS and used a wheelchair, was Marilena’s first connection to the disability community. The challenges her aunt faced ignited Marilena’s empathy and set her on a journey that would become deeply personal when she too, along with other members in her family, was diagnosed with the condition at 23.

Despite this life-altering news, Marilena became a leading advocate for the National Multiple Sclerosis Society in the UAE, determined to empower others living with MS.

“Living with Multiple Sclerosis can be debilitating,” Marilena explains. “It is like an electric wire which has no protective covering. The disease affects the nervous system, potentially leading to paralysis, vision impairment, and cognitive challenges. But people of determination, like myself, often hide our struggles. We’re not always seen.”

From law to a mission of inclusion

While her formal education is in law, it was during postgraduate studies in disability rights in Ireland that Marilena found her true calling. Her early work with disability communities in Europe brought her fulfilment, and when she moved to the UAE 15 years ago, she discovered a significant need for advocacy. “There was no formal definition of ‘people of determination’ in the UAE, nor a legislative framework for disability rights,” she recalls. Yet, she persevered, eventually receiving a grant in 2019 from Ma’an, Abu Dhabi’s Authority of Social Contribution, a milestone in her journey toward sustainable social impact.

Her social enterprise, aptly named The Butterfly, aims to create a society where people of determination thrive. The name symbolises transformation, reflecting Marilena’s belief that even small changes—like the flap of a butterfly’s wings—can have profound ripple effects. “The idea is that one small change can make a big difference, creating ripples of change that spread far and wide,” she explains.

Since its founding, The Butterfly has blossomed, growing from serving a handful of families to more than 500 parents across Abu Dhabi, Dubai, Sharjah, and Al Ain. In 2021, Marilena expanded her vision with the Inclusive Employment Ecosystem, the UAE’s first network focused on inclusive workplace practices. The network, supported by leading companies such as Standard Chartered Bank and Siemens Energy, has since grown from three founding members to 14.

“Our work in inclusive employment focuses on training companies to embrace disability inclusion,” says Marilena. “It’s not that companies don’t want to hire people of determination—they often don’t know how to start. Our role is to guide them, from leadership commitment to recruitment practices.”

Beyond raising awareness, Marilena’s work provides real opportunities for people of determination. Through The Butterfly, numerous individuals have secured meaningful employment, including Arianne A. Lagdamat, a 35-year-old hearing impaired woman who found a job at Siemens Energy. “I’m truly grateful for this job opportunity, which I prayed for, and feel motivated and fulfilled working with such a respectful and supportive team. Despite my hearing impairment, my colleagues and managers have been incredibly considerate, helping me overcome challenges and grow in my role,” she states.

Siemens Energy is one of the founding members of the Inclusive Employment Ecosystem, managed by The Butterfly. “The growth of the Ecosystem has been remarkable. The goal for this year was to reach 10 members, and we’re now at 12. The valuable contributions from each member offer meaningful learning opportunities for all,” says Folrian Koemm, Global Head of Legal & Compliance Operations.

Abdullah Alaydaroos, a young Emirati and dedicated ambassador for The Butterfly over the past three years, is set to start his full-time career with Aldar after interning there through The Butterfly’s network. Currently studying International Relations at Zayed University, Abdullah is expected to graduate this December, marking the beginning of his professional journey at Aldar.

“We have a dashboard of CVs for people of determination, making it easier for companies to find qualified candidates,” Marilena explains. “Our goal is to build a more inclusive society, one job at a time.”

Recognitions

• Michelin-starred chef Yannick Alleno on creating a winning sauce