A Rare Talent: The Life and Art of Mauricio Saravia

“You can be a bearer of light, in a world of darkness, where the sun hides in a silent eclipse.”
- Mauricio Saravia, “Eclipse”, exerted from The Book of Whispers

eclipse by Mauricio Saravia

As a mother, María Eloisa Damele noticed very early in her son’s life that his behaviour was not the same as the other children. As a toddler, he was constantly hitting his head, and despite numerous doctors dismissing her concerns, like many mothers of a child with a rare disease, she relentlessly pursued. It only took one doctor to offer her son an MRI scan to find he had a rare, life-threatening condition: McCune-Albright syndrome. Only affecting 1 in 100,000 to 1 in 1,000,000 individuals, the condition caused his face and spine to be deformed, in what is known as lion’s face syndrome.

Having his first surgery at only five years old in his skull, during which his heart stopped for several minutes, and he lost his left eyesight, this marked the start of many surgeries throughout his life. At just nine years old, Mauricio overheard a doctor say that his life would be short. Having started drawing when he was only a small boy, it was then that he decided that he would use the time he had to do what he loved most in the world - to create art. And so he did. Creating unique works with a surrealist influence, he held his first art exhibition at only twenty years old, and one year later at twenty-one he published his first poetry book. His determination for independence and success led to him moving alone to America - a huge feat for any adult - at thirty years old. Not only was he an artist and poet, but he also worked as a freelance graphic designer, and used his creativity, talent and love for technology to make an independent living. What's more, he was a talented photographer, using unique light techniques to find beauty in even the most mundane of objects. He eventually moved to Los Angeles, where he experienced Hollywood glamour and continued success. Mauricio lived until the age of 39, passing from complications from his condition.

Mauricio Saravia at film festival

His journey to success, however, was far from a smooth ride. Mauricio faced several challenges and setbacks during his life. Growing up in a world with seemingly little understanding of his condition, he suffered from bullying, harassment and discrimination - an example of a real, sadly relatable for many, effect of a lack of education and awareness of rare conditions. He also faced physical pain from his condition, many surgeries and even near homelessness, along with the endeavour to find quality health care having grown up in Uruguay. His mother, however, was there for him throughout these darkest moments, as she recalls in her book about Mauricio: fittingly titled “The Magical Life of Mauricio Saravia”, and she always encouraged him to shine. Despite all challenges, it is evident that nothing could come between Mauricio and his drive and positivity, as he never let his struggles define him.

Mauricio is not only an example of a successful, talented individual, but also one who lived life with positivity and optimism and didn’t let anything get in the way of pursuing what made them happiest. He is, without doubt, an inspirational figure for those living both with and without a rare disease, with his bravery and determination to live his extraordinary life to the fullest.

Links to discover more about Mauricio:
His official page  His artwork  His photography  María’s book  His Poetry

 


Author: Clara Maddison

Photo credits: www.lukeford.net

Page created: 20/10/2021
Page last updated: 20/10/2021
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases