LIFE WITHOUT EATING
In our society, there is always something to celebrate: birthdays, Christmas, family reunions, or meals with our friends. We normally sit around the table and think about eating a good, thick chop accompanied with a really good salad, or there’s a wedding cake, or mum’s delicious Spanish omelette, etc.
However, our children cannot eat anything. The disease they have means that they become ill whenever they each anything: vomiting, diarrhea, unconsciousness, intestinal intussusceptions, excruciating pain and many more disorders.
What feeds us can kill them!!!! Yet they must learn to live with food, its smell and watch everyone else enjoying a food-filled life.
For these children to be fed, they have to undergo a gastrostomy (surgery to place a fine tube directly into their stomach to be fed via a probe).
They are fed with elemental formulae, totally liquid, either orally or by probe. Some need to be connected to a machine or a feeding pump at night, and sometimes the nighttime is not enough and they feel ill, and need to carry the machine with them during the daytime to go to school, to play in the park, etc.
Their body can react to any food type which enters their body as if it were an invader, and it is not just food, but also medicines. It seems so natural to give a child apiretal codeine when he/she has a temperature, or use a cream when his/her bottom is irritated. However for our children, treating a simple flu bug is a complicated matter, so it is better not to think about anything more serious.
Consequences of physical activity
Our children are like all children, they enjoy running, playing football, riding a bike, etc. But they pay highly for doing so because the result of what are normal children’s activities means that our children have aches and pains in their legs and head, and ABNORMAL tiredness for their age.
Even so, despite these hardships, they are still children and need to do what children do to be happy. So we, as parents, try to let our children enjoy these activities as much as possible. Yet this involves prior preparation and putting up with the consequences later. For example, some friends have decided to go on a trip in the mountains on Saturday morning and have prepared some sandwiches, have taken peanuts or chocolate to eat on the way, and some drink, a change of clothes if they get dirty, etc. We have to start preparing earlier: a rest on the settee on Friday afternoon, go to bed early, connected to the machine all night. After the trip on Saturday, a siesta, which is the whole afternoon resting on the settee, and then pray that their leg pains let them sleep, even though it is for a while.
Psychologically very difficult
Think about your favourite meal for a moment; let’s imagine its Cuban rice (and that’s just three ingredients: rice, tomato and egg). So let’s now think that you have to eat Cuban rice for breakfast, for lunch, for dinner on Monday, Tuesday, Wednesday, 7 days a week, 30 days a month, 365 days a year, for years, but always Cuban rice. Now let’s go on to imagine you must always eat the same meal, and it´s not even your favourite one, it’s just a liquid with no flavour, and it provides just what your body needs to survive on.
And so it is that our children do nothing else but imagine and dream, almost to the point of becoming an obsession, that one day they can also eat something. Can you imagine what it is like denying your child food? And we´re not just talking about denying him/her sweets or € 1 to buy a Kinder surprise egg, but food. It is so hard not to be able to give our children a piece of bread when they ask you to give them a tiny piece so they know what it tastes like.
And it is not just lack of food. Can you imagine how hard it is to always live in pain, even though your vitality and will to live help them to fight and to support this disease so they can do all that helps them feel happy?
We must also bear in mind that the Hospital de Cruces is practically their second home; now if that is bad news for adults, imagine how our children feel about it … Every now and again, they need to be hospitalised, with all the implications that are psychological (hospital=pain=doctors who refuse me food), personal (organise their life around hospital appointments), school-related (missing classes, so they need additional support which is not always provided), etc.
Can you imagine how they feel? As they grow, they understand their disease less and less, they find it hard to accept their condition with each passing day, and they do not understand if they will be able to eat something one day, if they will lead a painless life and one without fear. It all depends on whether this disease can be investigated, a disease which through lack of research does not even have a name, and a disease which does not prove profitable for governments or pharmaceutical industries to research given the low number of people it affects.
For all these reasons, the families of these children have come together and we have recently created the GARMITXA association for the purpose of improving our children’s health and quality of life. We are willing to work and to contribute everything that we are able to, just as we have been doing since our children were born; but that is not enough, so we ask you to help us as much as possible by collecting plastic tops, by participating in our initiatives, checking our web site now and again to see if there is anything new, etc. We and our children thank you from the bottoms of our hearts.