Nathan, « Getting people to understand him is no trouble! »

Nathan Mai 2015 -6

At nearly 3 years old, Nathan is a little boy full of mischief and determination who knows how to express his desires and share his happiness. His trisomy 9p makes it impossible for him to talk yet, but he has no difficulty whatsoever in getting people to understand him. He uses his own means of communication! He is a very happy little bunny, growing up at his own speed and experiencing joy, difficulties and challenges the same as anyone else.

When he starts playing, Nathan is unstoppable, he fears nothing and gives all he has. Games? They are many: tea parties, football with his dad and all sorts of other fun games with his 5-year-old brother and 6-year-old sister. Nathan particularly enjoys dancing: he goes to dance classes with the association Expression and loves it when someone turns the music on at home for him to dance to. As the budding handyman he is, he loves building: putting things together, taking them apart, screwing, unscrewing… But what Nathan enjoys more than anything else is playing in water! This sometimes proves difficult because his muscle weakness does not allow him to do everything he wants and can cause him physical pain (headaches, cramps, stiffness, spasms). Still, his mother tells us he is always very eager to be counted in for every sports game!

For his age, Nathan is really quite advanced concerning will and determination. Because of his trisomy 9p he, indeed, has to be incredibly courageous and persevering as he experiences pain on a daily basis, forcing him to make great efforts every time he wants to learn something new. Anything he wants to learn must be explained, analysed and repeated every day without any guarantee of success. But the little boy knows what he wants and how to say so, using gestures and his usual babbling. He already wants to become autonomous and can do quite a lot of things on his own such as helping himself at the table. Perseverance and willpower are not qualities he lacks. His mother explains to us that: “Though it was said he would not walk until the age of 3 or 4, he started walking at 2 because of the great trust he placed in his physiotherapist”.

Trust is essential as far as Nathan is concerned. Indeed, though he becomes reckless when playing a game, he is very prudent when it comes to trusting someone. He takes the matter seriously and when he finally does trusts someone, his trust is complete!

His family, and particularly his parents, needed a fair amount of courage and trust to understand this little boy, who turned out a bit different from all the others. It was difficult to know who to talk to, how to deal with this intellectual disease which is still very little known, and how to explain it to his brothers and sisters. They had to try to understand Nathan without really understanding his disease. For help, the parents were able to call upon the Jérôme Lejeune Foundation, whose qualified team helped them take care of Nathan. There, they also found people who listened to them and were considerate.

Nevertheless, the household is often filled with joy because mischievous Nathan loves making jokes such as borrowing the key of the car he wishes he could drive! For fun and jokes his brothers and sisters can always count him in. He takes example on his big brother for whom he has great respect.

In order to find the energy to go through with all these activities, Nathan needs a lot of attention and love from the people around him. He is, indeed, a particularly calm and sensitive little boy. He likes hugging his big sister Louna, and every night he needs ten minutes alone with his mum before going to bed; a privileged moment that must be respected no matter what as it is what enables him to get through his a-bit-different everyday life. It helps him to forget about his worries and remember what is most important!

In the end, Nathan’s great strength is his ability to unite everyone around him. He is a charming young man, attentive to other people’s needs and who gains everyone’s affection by bringing them together and simply showing them his affection. One could almost forget about his mischief!

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NathanMai 2015 -2