MY LIFE WITH MY SON WHO HAS DRUG RESISTANT EPILEPSY

I am María Dolores and I am the mother of a 16 year old son diagnosed with drug resistant encephalopathIC epilepsy.

At 27 months old my son had his first epileptic seizure, this was not repeated until he was three years old. It was at this stage that his treatment began. We were told that the epilepsy could be mild to severe and it has turned out to be severe. The first time I saw him having an attack I knew it was like epilepsy, (I had seen a friend at school have epileptic fits, he turned out to be the best student in the school). What I did not know was that there are many different types of epilepsy and I thought they would disappear like my friend from school. I thought my son would take his medication and lead a normal life. It has not been like this, he had daily attacks which were not controlled from the beginning of his illness which has caused him to have a severe mental disability. His intellectual capabilities are the same as when he developed epilepsy, the biggest deterioration are his physical and motor capabilities although he has always had a moderate physchomotor delay which has worsened due to his height and weight (he is a heavily built young man).

Hello:

This letter is dedicated to all those people who made our children and us as parents so happy.

The five days we spent in Marbella went quickly for everyone, which shows how happy we were during our short holiday. Everyone highlighted how much all were thought of especially the volunteers whose unselfish excellent and hard work enabled our sons and daughters to forget their situation for a few days.

I believe that one of te greates satisfactions in life, the most beautiful and important work is to BE A PARENT and watch your child(ren) grow.

The arrival of a child gives rise to dreams, happiness and uncertainty. This profession does not require a degree, diploma or experience but it is the most complicated and difficult profession and ambitious challenge. 

The birth of a child is our reason to live and our motivation to work and fight each day to reach economic aspirations to ensure that the child does not want for anything. Before the child is born we as parents have an image about the child and the future: beautiful/handsome, healthy, blonde or brunette, pleasant, intelligent and that he/she will be successful economically and personally, in other words we imagine our child's future.

This story I am about to tell might seem like a novel or a film script from a Sunday afternoon type film, but for my family and myself it is reality, a daily reality in our lives...

It is a story of great sorrow which makes everyday things, such as daily tasks bringing happiness, because it means that my son is alright...... The truth is that our son and all children are angels who arrive in our lives and they give us everything, they enrich us, help us to be patient, tender, strong and most importantly to value the small things in life or rather the big things like a smile, a look or a sincere cuddle, that each day they provide us with immense strength and help us to be first class parents, or no?