ENG: A wonderful hard life. The story of the little big Elisa


written by Dott.ssa MARTA MOGLIE

english version

Elisa’s life is not one of the easiest: complicated and messy, but deep and alive. Elisa, 8 years old and a lot of energy and determination, fights every day against Nf1, a rare genetic condition which frequently causes skin pigmentation, skeleton abnormalities and learning disabilities, and tumours to grow along nerves ). This little girl, together with her mum Rebecca and her brother Daniele, lives her life with a rare consciousness of who she is and often tries to keep her chin up!
Nowadays the word disability is still a taboo, and Rebecca can confirm it. But what changes, she says, is the way you approach to it. I want to live, and I want my children to learn to stay positive, to include, to share the conviction that we can live a beautiful life also with a disability.

Elisa was diagnosed with ADHD ( attention deficit/hyperactivity disorder) at the end of the first year of primary school. She’s a volcano of emotions, she loves to dance, to sing and has a strong aptitude to draw and to learn foreign languages. She loves to spend hours playing with her brother. Rebecca tells us firmly:- I’m not a superhero! I’m a single mum and my relatives live away from me, but ours is not a life of isolation! We love to try new activities and to visit new places. Fear doesn’t stop us. Elisa seems to be distracted? It looks like she doesn’t even listen to what you’re saying? Yes, indeed! But she is still worthy! Accepting a rare condition means giving yourself time to grieving over, but not letting it push you down.

Rebecca, talk us about Elisa and sports. What sport does she like?
Elisa attends a course of modern dance and has a private lesson of swimming every two weeks.
Dance is a beautiful discipline but it is also a tough one! Did she choose it herself?
Of course she did, She preferred classical dance but the school other classmates attended didn’t prove to be an inclusive one: the teacher specifically asked me not to enroll her because it would have been too difficult for her to handle the girl. It’s been a hard moment but luckily I’ve looked for another solution and…here we are!

Your Instagram account is the mirror of your life, isn’t it?
Yes, it is. It’s born with the aim of advocating and spreading awareness about disability, showing that diversity is not a devil we have to fight, because a life with disability has weaknesses but also has strengths, and acceptance can be the key to enrich people.

One more question: how does her sibling live Elisa’s disability?
Elisa is aware of her weaknesses and expresses it so naturally. And so does Daniele. She is his sister and his best friend. Because of the slight cognitive delay they have grown up like twins. They spend so many hours playing together and they often want me to stay out! Daniele helps Elisa when she needs to, but he has also found a way to stop her when she becomes too invasive and doesn’t respect his spaces.

And for what concerns myself, I’m happy because I realize I have made a good job and I have laid the foundations for a life which I don’t know how it will be, but for now, is beautiful.

If you wish to know more about Elisa and her life follow them and click here!

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