Together for Fer, the family did not give up
Fer is a 14-year-old boy who lives in Venezuela with his father, Fernando Hevia, his mother, Jacquelin Padron, and his two sisters, Paula and Sofia. Like most boys his age, is passionate about video games. But Fernando is not like the others, and his family either.
When he was 3 years old, his parents noticed that dragged one of the two feet when walking, and decided to fix it with an orthopedic shoe. But they soon realized that his son had other problems, such as difficulty swallowing, weakness in your hands, ineffective cough and lack of facial gestures. Then began an odyssey of 12 years to know what was wrong exactly Fernando, followed by a much tougher struggle to seek treatment.
The National Organization for Rare Disorders (NORD) label as a rare disease when they suffer less than 200,000 people in the United States; Fernando suffers from mitochondrial myopathy TK2, a neurodegenerative disease that shares with 6 people worldwide. Cause a failure during mitochondrial respiration, which prevents your muscles receive sufficient energy to develop normally, and resulting in loss of strength. Last year he stopped walking. People suffering labeled as rare diseases have many problems to be diagnosed and find information, making it difficult to make decisions about nutrition, therapies … Fernando Hevia (father) explains that “little is achieved is in English, which It makes it much more difficult for the Spanish-speaking parents learn what to do, and developments and progress. ”
But worst of rare diseases is cost. Rule three: if a disease is suffered by few people, will also be investigated by few. And as drugs can not be sold en masse, nor will there be many benefits for pharmaceutical companies and research centers. But the cost of a study at this level is high, and part comes from the pockets of the patient and family.
The family learned Hevia few months that Columbia University offered an experimental treatment with a substance called Deoxypyrimidine Monophosphate is working well done. Hence the idea of creating the ‘JuntosPorFer’ campaign through social networks and GoFundMe platform. They began to be noticed in the media to raise awareness and simultaneously gain the support of any person, company, organization or any entity that wanted help. So far they have raised just over $ 40,000. But they are aware that it is difficult to afford long-term treatment based on donations from individuals, and trust that runs an organization offering a viable option.
Fernando was born when measured 51 cm and weighed 3.4 kg, a newborn without problems. Today, his father describes him as “a guy who does not complain about his situation and that every day teaches me to understand not wanting to have all my senses, limbs and body functioning perfectly, and therefore do not have excuse not to fight for his life. ” Fernando continues: “We are the pillars of our children and we must fight but inside we feel we can not.” Father and son teach us that we can all get involved together for others. Together for Fer.