If anybody is traveling to Cuba, please let us know. (Not Just Tourist-Calgary) We need to send protein/ carbohydrates powder as our little girl in Guantanamo needs it to survive and she is slowly losing weight, very fast please help!!!
Liah Valiente is a “warrior” – as is often called to infants who suffer from SMA (Spinal Muscular Atrophy in the world) – and she has exceeded the predictions that they estimated for her, two years of life.
Liah suffers Spinal Muscular Atrophy (AME) type 1 or Werdning Hoffman Syndrome, a degenerative disease that destroys the motor neurons, causing the progressive weakness of the muscles of the whole body and therefore, preventing their functioning.
The one drug that could give the family hope is called Spinraza (also known as nusinersen), a medication approved on December 23, 2016 by the Food and Drug Administration (FDA). Currently the Cuban Ministry of Health cannot directly access medicines manufactured in the United States, in this case by the biotechnology company Biogen, dedicated to the development of therapies for neurodegenerative, hematological disorders and rare diseases. The harsh blockade against Cuba is the reason. Liah does not understand anything about politics; she cannot at her 3 years of age, but she feels firsthand the result of the blockade, hindering Cubans’ access to treatments that can save many lives including Liah.
Thanks to Cuba’s health care system, Liah is getting the best care available at home where she receives special care from doctors and nurses that are by her side every day from 8:00am to 8:00pm. Liah requires a rigorous diet of vegetable smoothies, puree and natural yogurt that she consumes – of which only receives a dose of meat and milk corresponding to a regular diet. The cost of electricity from all equipment that keeps her alive can be overwhelming but are crucial for her survival. , other expenses include anti-bedsore creams that are only available in the international pharmacy, diapers, wipes etc etc.
Her story (in spanish) can be read in the following link.
http://venceremos.cu/salud/11494-liah-esta-viva
