In 2017, let’s help children with rare disease have quality education
MeQuedoUno starts a new project!
César is a 20 years old student and has the Apert Syndrome, one of the 7.000 rare disease that exist. Today we have the pleasure to present you his testimony and story, so we can know a little bit more which challenges they face and how it’s their day to day.
“My name is César Díez, I’m studying Informatics and I have Apert Syndrome, a congenital disorder that affects chromosome 10 and is characterized by a general malformation of different bones, mainly of the head and face. It is a disease that, if not controlled in time, can cause blindness, deafness and intellectual deficit. We are born with our fingers and toes together (syndactyly) and my treatment involves multiple operations and long hospital stays, many kilometres far from my house.
I was born in Merida, a city of 60,000 population and with a small hospital. I was the first and only born with my illness in this health centre and the doctors saw so much difficulty in my state that they only gave me 48 hours of life … meanwhile, I tried to fight the most and enjoy my life, like what I’m doing now.
Throughout my life, both my parents and I have fought constantly for an “inclusive education“, that doesn’t discriminate for my physical or intellectual deficiencies and allow me to have access to a quality education.
In spite of my multiple operations and long stays in hospitals, and that on several occasions the educational system have invited me to attend to “special education” classrooms, I have achieved my goal! After finishing the bachelor’s degree, now I’m studying a high degree in “Telecommunications and Information Systems”.
The constant work together with the Education Council in Extremadura (Spain) and the FEDER (Spanish Federation of Rare Diseases), has allowed us to take another step to make the access to quality education a reality. For example, we have recently launched the “Protocol for the reception and care of children with rare diseases” in the schools in Extremadura. Our mission is that all children with rare diseases have an educational response adequate to their abilities, potentialities and needs. We’re sure that, all together, we will achieve it “.
Now, the users of MeQuedoUno have the opportunity, like César, to contribute and collaborate with one of the educational projects that the Spanish Federation of Rare Diseases (FEDER) carries out to guarantee access to a quality and equitable education, regardless of their conditions and circumstances.
With their help, in 2017 25 children with rare diseases that attend school will be benefited from the FEDER Education Assistance Service.
You can follow the project through this LINK.