Marta Santana, also known as ‘the warrior princess’, has passed away this TUESDAY from a unique disease in the world, which she had suffered from since birth. The little girl, just four years old, lived with her parents in Vecindario, in the Gran Canaria municipality of Santa LucÃa de Tirajana, and had an 87% disability due to a genetic mutation of chromosomes 4, 13 and 18.
At just three months old, doctors discovered that she suffered from duplication and deletion syndrome affecting chromosomes 13 and 18, and also carried “a material loss variant of cytoband 4p15” that has not been found in other patients.
These alterations forced Marta to remain connected to a pump that supplied her with food for 12 hours a day. The little girl’s illness required 24-hour care, a fact that forced her mother, Cathaysa Sánchez, to leave her job to take care of her, she said in an article published in La Provincia.
This rare disease, which still has no name, caused him cognitive and intellectual developmental delay, severe hypoglycemia, hypothyroidism, bumping syndrome, scoliosis and prevented him from walking. Also, Marta was blind and deaf. All these affectations she had to bear by taking ten medications a day and with the morphine that her parents injected her several times a day.
The girl died without living in an adapted house for which her parents, Aridañy Santana and Cathaysa Sánchez, had been demanding for three years, as reported by Canarias 7. Her parents had requested an adapted home for almost three years, but they never arrived. to receive a response from the institutions.
In fact, every movement and daily activity was a journey. Little Ella moved around the house through an orthopedic cart that her parents had to maneuver every time she wanted to move from one room to another. In addition, the daily bath meant an extra effort for Aridañy and Cathaysa, since they did not have a shower tray to enter the car, they could not even sleep in their own room, as denounced by the half-Canarian.