Blog

Doug Lynch

Doug Lynch is 41 years old and he was diagnosed when he was 37. He had all the symptoms related to the disease during his life.
He lives in New Zeland and he says he is lucky as he does not have to work “The NZ government gives me a nice handicap benefit to live off” says Doug.
He has a family and he says his 2 boys give him a reason to keep going in life. His hobby is to paint. He paints using 1 colour and lots of greys because of his colourblindness
He also has a message for all Wolfram syndrome patients:
“WS is a horrible thing, but we must keep going. Try to find something you like and are good at. Don’t let WS hold you back”

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Leonardo Sabino

Leonardo Sabino is 29 years old and was officially diagnosed with Wolfram syndrome 4 years ago.

Tragically, the pacient says he developed blindness in a short time when he was just 18 years old. Leo also suffers with osteoporosis, severe hearing loss, bladder issues and diabetes mellitus.

Even having a lot of symptoms, you will not find a more charismatic  patient than Leo. “Every day when I wake up I receive a voice message from Leo wishing me a nice day and asking me how the westher is like in Porto Alegre. He is always funny!” , says Rafaela Ungaretti.

The patient’s willpower is  too big. He is currently taking a braille computer technical course and tactile pounds course with a deaf, blind and mute teacher. He also took an archeological technical course and he wants to apply to university this year.

The WolframInside is very proud of him!

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Deived Elton

Deived Elton is 27 years old and was diagnosed with Wolfram syndrome when he had already developed diabetes, optic neuropathy and hearing loss. He was diagnosed with the disease two years ago by a geneticist.
Deived is full of pure energy! He is already married, plays piano and he is also a music teacher! He always tries to find services that can help him in his daily activities.
“I try to enjoy my life like most people my age, recognizing and accepting my limitations, but not surrending me to them,”, says Deived.
The Wolfram Inside is so happy to share the story about this talented pianist.

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Raquel Gebel

Raquel Gebel is a gorgeous 12-year-old girl who was diagnosed with Wolfram syndrome in the fall of 2010 when she had already developed diabetes mellitus type 1 and optic nerve atrophy.
Even being so young, Raquel is already blind in one eye and legally blind in the other one. She also suffers with bladder issues, severe migraines and hearing loss.
Despite having the symptoms caused by Wolfram, the little Raquel enjoys learning how to play piano and she wants to start learning Karate this summer. She is a special girl!
Raquel also has a personal assistant to help her in her classes. She is currently learning Braille to help her in her day-to-day activities. Raquel is a sharp girl!

The WolframInside is so happy in following the story about this warrior of a girl.

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Natã Trindade do Vale

Natã do Vale was diagnosed with profoundly deaf when he was just 7 months. With 3 years old he received a cochlear implant on the right ear. Due to her deaf, Natã has not already developed her full speech and he has to communicate by pounds. Later, after start failing his vision, loss his hearing and after the diagnosis of diabetes mellitus type 1, Natã’s family – Janete, Gilson and Rafaela – received the worst news, when Natã was 8 years old – He had Wolfram Syndrome.
Natã goes to the visual adapting twice a week. He receives help of private tutors in his classroom and he also has been doing pedagogic therapist with a deaf teacher.
He is so sweet, very smart and an amazing boy! Currently, with 14 years old, he is learning some words to pronouce. Some specific words, for example: mom, daddy, sister, the name of his relatives, the name of his cats and some foods.
WolframInside is so proud of him! Congratulations!

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