They have a missing enzyme but also they have extra love

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It’s been said that everything happens for a reason and that at some moment we are going to be grateful for everything that happens to us. In the case of my family, the situation I am going to tell was no exception. We were trying to move on after a tricky moment that was complicated for many reasons but mainly because a lot of problems and reasons come together at the same time. They say that misery loves company and that problems don’t like to be alone so they always come together, this situation tended to be alike, the problems came all together and each one of them tended to tangled over the other.

 

What happened

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I have a small company that makes art workshops and activities for kids and some time ago, I was hired to work with a group of kids with special health condition who for that reason required a weekly intravenous treatment that they have to receive at the oncology wing at different hospitals, the idea was to entertain them during that treatment that lasted for eight hours.

I decided to accept this contract because I thought I had the necessary experience for undertaking it, I had been working for years with children with special health conditions and issues.

I had worked with cancer children – I have to say that it was a very painful and difficult experience because if death is difficult to accept and understand when there is a life to be tell it’s impossible to understand and to explain to ourselves when the adventure is in its very beginning and when we wonder everything that could be said about that life, some years from now.

I also worked with special needs children: Cerebral palsy, autism, children with a previous stage of psychosis, children with problems language and communication problems, motor problems and children different learning disabilities including a boy who doctors had undergone a lobotomy (brain surgery) in which he has removed 75% of a brain’s lobe.

I learnt from them lots of things but most of all I learned from them the real power and meaning of resignation, and love for the life, unconditional and pure love. For all that reasons, I thought I was prepared for the task that was waiting for me with these kids with one of the inherited and degenerative diseases also known as Rare Diseases.

Life has its own order no matter if we understand it or not, and because as my Grandma always recalls: God writes straight in crooked lines, my mother was with me on that very first day that I started working with those kids.

She is a nurse and not only she knows a lot more about health issues than I do but also she has seen truly impressive cases and has been seeing the gloomy eyes of death for all her life.

Both, her problems and mines, vanished completely and simply ceased to exist and our lives changed forever.

 

The institution

She has been, for five years now, fully dedicated with her Foundation to bring a little joy to the life of these Little Great Masters although as she continuously says, she is the one who learns, the one who recasts and constantly reviews her life, but most of all my mother has concluded that she’s the one who is vulnerable or we are, all of us are vulnerable not them.

Those kids and their caregivers despite of having all the deteriorating conditions a person could ever have are genuinely and truly happy and most important they really know how to make each day count as it is the last one and for then, at any moment, it could really be the last day on earth.

Some people suffer from a health condition and they suffer for all their lives because they’re missing something: a limb a kidney or they have some attention or learning deficit, they have a heart condition or they have a lack of feelings (not all the shortage are physical, those who are incapable or handicapped for love or for showing it also tend to suffer for a lifetime).

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The enzyme

These specific kids have a syndrome that will gradually altering all organs and body systems and often death after a long deterioration process at an early age. What causes the physical attrition is that they don’t have an enzyme in their bodies, just one substance in a whole complex organism, everything is perfectly calculated in a universe where having more is as harmful as having less in each and every aspect and in all life situations, a world in which it seems that the communal lesson, what we need to live is to learn about the abstract but fundamental concept of balance.

Those who have the illness suffer lots and also suffer the families who watch them getting worse daily but all them agreed that Mucopolysaccharidosis, -the scientific name for that disease, or MPS IV, as it is most commonly known- is a Master with an illness face, that is here to teach us every day about happiness to every person who is fortunate to get to know this kids who have a lack of an enzyme but have extra love, commitment, devotion, joy and spirit generosity in all kinds, sizes and types.

This disease is also difficult because it has two other particular conditions that make it difficult to accept but also that encourages more admiration and respect for those who have to live with it in first or second hand.

The illness can not be detected in an intrauterine way, those kids who are going to develop it are born and begin to grow without any alarm symptom for the first months (even the first years), normally and if they don’t go to a genetics doctor, the family is not going to be able to know until the first childhood years where most of the times the main symptom is that there may be problems and delays in growth.

Families think that everything is “normal” and the kids begin to develop adapting to life conditions that they will have to quit or to adapt later on.

The other condition that will accompany them throughout their lives is that the intellect is the only system that doesn’t suffer any deterioration, they don’t have cognitive or learning disabilities and they are smart and fast learners, which are often more intelligent than the most of the kids from their age. No, neither they can be considered “Special Kids”.

Although the disease doesn’t have any cure and the life ahead those who suffer it is in most of the cases very short (the rates shows rare study cases that have reached 30 years old) and generally the disease itself doesn’t let them enjoy their days here on this planet as they should.

Most of them loose vision, ear, movement and the voice, they suffer continuously from heart, pulmonary and renal diseases that make them stay in the hospital for days or for weeks or that make them stay at home for long periods of time and although when they are in better shape they should go anyway once a week to have their treatment at the hospital because this is the only way in which medicine can retard by an artificial infusion of the enzyme the illness progress and the body’s disrepair.

A medical treatment that in most of the cases make that the kids have lacks on their solar development because of the recurrent absences, despite all the reasons previously explained and the condition itself, the kids with IV medicines and all the discomfort of a chemotherapeutic treatment and their families struggling meanwhile for obtaining economical resources for the expensive treatments and all the expenses that it implies.

 

The teachings

They are always some happy kids, they always have a smile on their lips, they also make jokes about their condition, they laugh about themselves and they laugh about all that surrounds them. If they attended a contest they will all win, without a doubt Mr. and Mrs. Congeniality award.

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They, the Little Great Masters (and literally they are little or short heighted because of a consequence of several muscle skeletal disorders such as arthritis and osteoporosis, also caused by their condition) come to the life of all of us who know them to teach us about happiness and how it just depends on us.

They come to remind us that both happiness and joy are daily decisions we can take that only depends on us and that external conditions are just little quizzes to see if we can show the world our best face –believe me being around them you realize that smiling and showing a good pose to the world is always an option- we also learn from them to live and value each and every moment as it was the last, in their cases it can always be the last, but most of all they come to our lives to teach us how to always remember for those who can’t but are actually still smiling.

For me, the contact with Mucopolysaccharidosis kids changed my life for ever but not because I was thankful not to having that disease or because I realized how lucky am I to be healthy, it changed my life because I am thankful for knowing them, being able to share with them and most of all, I am thankful for being able to learn every instant from those who praise and thank the life for being able to breath and being alive one more day. They are the ones who truly understand the value of each day.

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