Story By: Jonathan Macias, Sub Editor: Joseph Golder, Agency: Central European News
This 22-year-old lad who suffers from a rare disease with only around 70 cases reported worldwide has virtually met a girl who suffers from the same illness on social media, and is now hoping they can meet in person after writing her romantic letters.
Matias Fernandez Burzaco, 22, lives with his family in the Argentinian capital of Buenos Aires in the province with the same name in the north-eastern part of the country.
The young man suffers Juvenile Hyaline Fibromatosis (JHF) a rare disease that presents with multiple cutaneous nodules or masses, gingival hypertrophy, joint contractures and osteolytic lesions with skin lesions being the most prominent symptom.
According to a scientific article published by the Indian Journal of Dermatology only 70 cases have been reported around the world.
Fernandez reportedly started exhibiting the symptoms of the rear disease when he was just one year old. The disease reportedly spread through the years and nowadays the young man needs a wheelchair to move and uses a breathing machine at night.
He also uses a mouse connected to his laptop and his mobile phone by Bluetooth to write as a hobby.
Fernandez told local media: “I think when you write you do it to discover, to convey what you see and how you feel.”
The young writer has published some of his writing pieces in the magazine ‘Revista Orsai’.
But he has also started using his writing to talk about his condition, and his most recent work has been a letter to another sufferer of the disease, Mayra Ordonez.
Because the disease is so rare, a doctor who treated both Fernandez Burzaco and Ordonez put them in contact 14 years ago when he was only eight years old.
At the time he was uncomfortable when they met at his house in person and they only met briefly.
However he is now older and that writing is helping to come to terms with his illness, and it has also brought him close to her.
He said: ” I want to talk about what has happened to others. I do not want to be on my own.”
In a message to Ordonez he wrote: “I want to visit your house, touch your skin, see what the disease did to you.”
Although the meeting has not happened yet Ordonez is hoping they will meet in the future and after reading it, she apparently feels the same.
She said: “It would be good to meet again. I talked to him about it but we have not set a date yet. In the beginning, I was surprised because we met long ago. But I loved it, I loved the letter.”
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