Raphaella Renanthera Gautama was diagnosed at 15 with fibrodysplasia ossificans progressiva (FOP), an ultra-rare genetic condition characterised by abnormal bone development of muscles, soft tissues and tendons. This condition progressively restricts movement, with the extra bone formation resulting in chronic pain.
The 20-year-old’s pain levels vary from day to day – from being able to go about her daily life to being unable to get up from bed. Her hips and jaws are the most affected areas, impacting her ability to walk, eat and speak. Raphaella began using the wheelchair four years ago to get around.
Life threw Raphaella a few curve balls in 2020. During the pandemic, she experienced the passing of her father and the worsening of her condition, all while sitting for her GCE ‘O’ levels. Raphaella’s family not only had to cope with the grief of losing a loved one, but also had to manage complex legal and financial matters, adding further strain to their emotional journey.
It was during this period that Raphaella saw how her mother, Ms Michelia Thearenga, navigated complex legal issues that it sparked her interest in law studies. This led her to pursue a Diploma in Law & Management at Temasek Polytechnic (TP).
When Raphaella first started school, she was not fully aware of the accommodations she would need, including physical access such as lifts and ramps. With the help from her lecturers and the school’s special educational needs support team, she embarked on a journey of self-discovery. Raphaella learned the importance of self-advocacy and discovered that she could pursue her aspirations with resilience on her own terms. By choosing to confront her challenges, Raphaella turned adversity into strength.
In May 2024, Raphaella graduated from TP and received the Ngee Ann Kongsi Most Outstanding Overcomer Award which recognises students who have shown strong perseverance in overcoming life’s setbacks to complete their studies with good academic records and exemplary conduct.
Raphaella is now pursuing a Bachelor of Arts in Linguistics and Multilingual Studies at the Nanyang Technological University (NTU). She decided to study linguistics to gain a broader and more nuanced skill set, which she believes will benefit her in a future legal career. She was awarded the Asia Pacific Breweries (APB) Foundation Scholarship in September 2024 to support her studies at NTU.
Raphaella is grateful for the scholarship as it not only recognises her hard work and achievements, but also grants her the autonomy to make her own choices. “It was me taking responsibility to tell others what help I needed, instead of waiting for them to ask me,” said Raphaella.
Ms Thearenga is immensely proud of how far Raphaella has come, “It hasn’t been easy for her, who was once healthy as a young girl, but she persevered. As her mother, I admire her not only because she is my daughter but because of the remarkable person she has become. I hope her story will inspire others not just with the same disability, but those who struggle in life as well,” she said.
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The Asia Pacific Breweries Foundation Scholarship for Persons with Disabilities is a bond-free scholarship. It supports students with physical, sensory or developmental disabilities in their university studies at six local institutions with no restrictions in the discipline of studies. It is also the only pan-disability scholarship in Singapore. Since its launch in 2004, the APB Foundation has committed over $2.4 million to the programme and has since awarded 63 scholarships.
Find out more at https://www.spd.org.sg/scholarships/.
