Have you ever been hospitalized? For a majority of you, the answer might be no and for some others, it might be yes but for a relatively short period of time and maybe you don’t even remember it.
Now I would like to ask you to close your eyes and imagine yourself in the shoes of those children who were born with or developed severe diseases and whose life had to be redefined around hospital and doctors. These children probably didn’t experience a ‘normal’ life as you had.
Let me tell you my story, during the first days after my birth, I was affected by Intestinal Epithelial Dysplasia (intestinal malabsorption), a rare genetical chronic disease. Explained straightforwardly, the nutrients in the food I ate could not reach my blood, I couldn’t eat orally, and I always suffered from severe diarrhea. At the age of 3 months, I fell below my birth weight. My parents had no choice but to take me to France from Morocco, where we lived, to receive better quality health care. As this disease can be cured only with time, I had to spend 15 years in France under parenteral nutrition (a way to feed me artificially without using the digestive system). I have healed two years ago and returned to Morocco before going to university.
After I arrived in France, I stayed for 3 years in intensive care. The following years until I was 7, I stayed in the gastroenterology service permanently where the care was less important but still I needed to stay all the time. After my health improved I went to live with my adoptive family and returned to the hospital only 3 nights per week to receive the care I could not give myself.
As you can understand, I spent an important part of my life at the hospital, in this stressing, strange and demoralizing atmosphere. I know what it is like when a patient feels he is alone, he has nobody to talk to because his family can’t always be by his side, or that he is stressed because he doesn’t know what is next and that no one has explained to him the situation at all or in an understandable way. I had the chance to adapt to this with time mainly thanks to the mental support we received from some associations.
From my personal experience, I naturally had the idea to create Breath In. This student-led project aims to provide mental support to children with a disease in the hospital or those at home but who have difficulties to live with it in London.
This year, we will host different online events so that children who suffer or have suffered from disease can share their experiences together. We will also host online conferences with panels of Health care professionals who will talk about their roles, reassuring the children and provide advice on how to approach their relationship with the disease and how to better live with it.
Join us if you want to help disabled children to Breathe-In again!