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Meet Luis 

Luis

I am Luis, who lives at home with my parents, older sister and younger brother. I love to attend my school that helps me, as I have been diagnosed with a rare illness called Nascimento X linked disease. This means that I have a few different factors to contend with daily:

 

  • I have irregular sleep and can be up most of the night 

  • I use Melatonin to help me get back to sleep

  • I wake up with a smile and am happy 

  • I walk wobbly and generally walk short distances as my balance is not perfect and I fall over

  • I use my pushchair or wheelchair for longer distances

  • I am unable to communicate with words and use sounds instead, pointing to different things

  • I can get frustrated when I am not able to say what I want and everyone is trying to work it out

  • I have to take two different medicines in the morning and in the afternoon to reduce my seizures

  • I must travel with Buccolam in case my seizure lasts more than 5 minutes to prevent further issues 

  • I enjoy watching a series called Duck Tv for kids over and over

  • I enjoy eating, fries, most rice dishes and snacks

  • I would like to play with my brother and sister more and do the things they do

  • I like tickles and playing you can't catch me

  • I like throwing imaginary objects and laughing at it

  • I like hugging my family and friends

Luis' Events 

Luis has had an eventful childhood so far from seizures to surgeries. Here are some of the events that have happened so far, just to give a background on the effects of his rare illness.

Luis At School 

Luis has been lucky to have a SEN school in Scotland and also now that we moved to Cambridge. It was not easy as the waiting times and process to get an EHCP in place is not always as straightforward as it may seem. There was also an what seemed to be an easier route of putting Luis in a mainstream school and have additional support. We knew that was not going to be the right environment both for him and the other students so we declined on multiple occasions. 

There are so many reasons it would not work, from the him being non verbal to being overwhelmed when he is not able to interact with other children and big crowds, a lack of awareness and danger, still very unstable on his feet, needing constant attention, having naps during the day, wearing nappies, does not play with toys for any prolonged amount of time, throws things and laughs at it, can cry and not stop until he is hugged and consoled.

However with that being said at the right environment in a SEN school and the right support around him, Luis loves going and being able to express himself everyday. We have an app that allows us to see pictures and a report of the daily actives where he has had some success and how the teachers creative abilities allow him to be himself. Luis has an ability to make friends really quickly and most teachers seem to know who he is.

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