February 29th is a special day occurring only every 4 years, the rarest day of the year. Therefore, around the globe we celebrate on the last day of February the 'RARE DISEASE
DAY'. A day to support and raise awareness, a day to celebrate diversity which is so important to our societies. We strongly believe that researchers need to get in dialogue with those affected by rare diseases to learn to speak a common language and understand their needs.
For Rare Disease Day 2024, we welcomed Tina, Rog & Mui Thomas to share their family story, a testament to the resilience and strength of the human spirit, and the power of love and determination in the face of adversity, a reminder that behind numbers and statistics there are real individuals and their families.
Born with Harlequin Ichthyosis, a rare genetic skin disorder that can be life-threatening, Mui's journey, along with her parents Tina and Rog, defies the odds and challenges societal norms. From the moment Mui was born (in the then British territory of Hong Kong), she was hid away an abandoned. Despite having no wish to start a family, no wish to adopt, and no wish to have a child with a disability, Tina and Rog did all three. They were confronted with daunting predictions and societal prejudices, and were advised to walk away from Mui, to spare themselves the challenges of raising a child with such a condition. Their decision to fight for Mui speaks volumes about their character and dedicated commitment.
Through their experiences, they have challenged assumptions, emphasizing the importance of standing up for others with actions not words. The family speak of the comedy with pathos, the ignorance, prejudice, pressure, celebration and laughter that continues on a daily basis. Their journey, filled with both challenges and triumphs, is a reminder that every individual, regardless of their differences, deserves love, acceptance, and the opportunity to thrive, and challenge societal norms.
'The Girl Behind The Face' initiative, founded by Tina and Rog, serves as a platform for raising awareness and fostering understanding about rare diseases, shedding light on the profound impact of standing up for others and advocating for inclusivity.
For more on their initiative and to support their work, visit their website:
https://www.thegirlbehindtheface.comand follow them on social media.
StandUp4Others
Website: http://thegirlbehindtheface.com
Facebook page: https://www.facebook.com/GirlBehindTheFace