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9th May 2017

A Four Year Old Boy Whose Life is Sustained by Parenteral Nutrition

He puts the mask on, which covers almost his entire face, and he looks just like a character in Paw Patrol.

Alex lies on the couch and his mother, Elizabeth, proceeds to plug him into the parenteral nutrition machine. Alex will be connected for 16 long hours. The whitish fluid begins to circulate through the tube until it reaches his veins, which receive blood proteins, vitamins and fats that the body needs. Alex is four years old and for his whole life has been connected to this little machine – the only thing that has kept him alive. He is one of 400 people in Spain who currently rely on parenteral nutrition to feed; the result of very different kinds of diseases, from cancers that impact the digestive system to multi-visceral problems, such as short bowel syndrome, the most common in these cases.

Alex’s disease, however, is the rarest. Called Trichohepatoenteric Syndrome, it is documented in only 44 people worldwide, and affects the intestines, liver and hair, with patients adopting a woolly and faded appearance. But above all, the syndrome prevents the digestive system from absorbing nutrients properly. “Before we had a diagnosis during his first year of life, we spent half the time at home and the other half in the hospital,” said Roger, Alex’s father.

Two years ago, they finally received the diagnosis of Trichohepatoenteric syndrome, and since then have tried to lead a life of “the most normal possible.” Two months ago they went to the Hospital San Juan de Dios, where they were provided with a backpack to carry all of Alex’s parenteral nutrition. Until that point, Alex had to stay at home nearly all the time. “It was a turning point,” says Roger, who says that there are still many things that the family cannot do. “We cannot be gone more than five days, because that’s as long as the parenteral nutrition lasts,” explains Elizabeth, who is a dental assistant. There are many things that must be up in the air. “Some nights I wake up and the tube is around Alex’s neck. You must ensure there is no air in the tube, or it remains sealed. When any of these things happen an alarm sounds and you have to solve the problem.”

Despite the difficulties, sitting on the couch while watching Paw Patrol, Alex is seen as a happy child. In some cases, those affected by the disease are able to discontinue using parenteral nutrition when they reach adolescence, but research is inconclusive. “We prefer not to think too much in the future. For the moment we live day to day,” says Roger.

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