We are in Madrid, the day comes to an end and around us there are many voices and people. We are here for the Parent Project Spain conference: an event that annually brings families from different parts of the country and from South America to receive updates about Duchenne and Becker Muscular Dystrophy in terms of research and care. An event in which a community already so compact and full of energy is strengthened. Mary Paz is part of this community.
How it started
Mary Paz is a strong woman with an enlightening smile. Being a woman able to involve everyone, it is not by chance that she is the event coordinator at Parent Project Spain. Mary Paz is the mother of the great little Alejandro. «It was the teacher who realized that something was wrong. She knew that something was wrong. We accepted her doubts, trusted her and decided to start with taking some exams », says Mary Paz. From there, the long journey begins, one that takes you to many places, asks you a thousand questions and then arrives at the day of the diagnosis “Duchenne Muscular Dystrophy”.«That day we embraced the doctor and at that moment began the worst period of our life. Usually, when you receive a diagnosis, the doctor also offers you a cure, while in this case you know that there is not a cure yet. You can do a lot and research has done a lot, but there is still no definitive solution», continues Mary Paz. In the period following, the diagnosis is the most difficult part to deal with and so it was for Mary Paz, her entire family and little Alejandro. «One day the teacher called me to tell me that Alejandro was colouring only in black and white. This made me think a lot. I realized it was time to do something. I found Parent Project Spain on the Internet and that’s where a great part of our journey has changed: there we found hope, comfort and information », says Mary Paz.
Path to change
A new path begins on their journey of life wrapped up by the affection of the family, friends, the community in which they live and by the families of Parent Project Spain. «I spoke to the teacher after a while and she showed me Alejandro’s drawings: they were all different kinds of colours. I understood how important the parent’s serenity for the child is, and even today when someone asks Alejandro if he is worried about his illness, he replies “if my mom is not, I’m not either”. So it is », says Mary Paz.
Alejandro is an energetic child. He has many friends, and his classmates have always protected him for his “weak muscles”. Among them is Raúl. He is Alejandro’s best friend. Raúl and Alejandro have always had a special relationship, starting from the fact that they were both the smallest in the class. Raúl is a real friend: it does not matter when and how you meet him, because a real friend changes your life. And so it was.
In the Asturian Community of Northern Spain where Mary Paz and her family live there has always been a lot of attention to the story of Alejandro and a great desire to help. Many events have been organized and Raúl ‘s family was often involved. One day, Raúl decided to do something special for his friend Alejandro.
Making the difference
Raúl is very good at playing football and his family has always given him two euros for every goal scored, for him to buy what he liked most. One day, after one event, Raúl took a newspaper to look at the photos, he read the article and the world changed. That day, Raúl understood that what he liked most was helping doctors and researchers finding a cure for his little friend Alejandro. His parents approved the idea and helped him carrying it out perfectly.
From that moment a solidarity chain started, launched by the creativity, talent and kindness of a child. Raúl has been interviewed by many local and national newspapers, has met several sportsmen, and has involved thousands of people. From that initiative, classmates, family, and friends rowed in the same direction: they put their grain of sands to support this project.
Raúl made the difference. And he did it for friendship. For Alejandro and for all children and young people living with Duchenne Muscular Dystrophy.
This is the first story of a new series ‘Duchenne Stories’, were we collect intriguing, touching and thought-evoking stories about Duchenne families. If wish to share your story too, please contact Nicoletta Madia on [email protected].