VILLAFRANCA PADOVANA – «What life has taken from you now we are trying to give it back to you». The message is always the same, the photographs change from day to day. Marco throwing the ball, Marco smiling at the village party, Marco having fun with the bucket on the beach. And then again: Marco playing with the dog, Marco cheering at the stadium, Marco embracing the volleyball champions.
The life of a child told through the emotions, words and shots of a father. The author of the diary is called Tomas Bellotto, is a 52-year-old electrician from Villafranca Padovana and daily shares on Facebook the moments lived together with his nine year old childi have had a rare disease since birth.
Tomas, your last post is about the Saturday trip. «Hi friends, today my dad took me to the sea, which I really like. My whole life is made up of beautiful days ».
“My son is a force of nature despite all the suffering. This social diary is good for him and good for everyone who reads it “.
Shall we tell his story from the beginning?
«Marco is nine years old and has a very rare disease which is called in jargon “Small vessel disease with bleeding”. We discovered her when she was six months old. One morning I found him with his eyes wide open: she was in the throes of an epileptic seizure, we urgently took him to the emergency room. We have made a lot of visits and we have arrived at this diagnosis ».
And the battle began immediately …
«We rolled up our sleeves and began our adventure to make Marco’s life a little more dignified. Consider that the doctors had given it to us as a vegetable … ».
There is a phrase that he repeats often. “Our happiness is when we manage to spend a lot of time together.”
«Our glass is always half full, Marco has fun and does a lot of things. And it has also become international: it is followed by France and various other parts of Europe ».
Thanks to social media. How did the idea come about?
«Already several years ago I wanted to share some news about Marco but I was reluctant because I didn’t want to show people all our things. Then a few ago the spring was released. The deputy mayor of Villafranca, Sandra Scarabottolo, one day invited us to the Municipality and we agreed on the idea of highlighting our history and our daily life ».
To give what message?
“To give a message of positive energy, to tell everyone that there is nothing to be ashamed of for what happened to our family”.
When she writes, do you think about the fact that so many other parents are reading it in similar situations?
“Of course. To all these parents my wife Cristina and I want to give strong encouragement. There are many families who live their dramas in the shadows, instead sharing their stories is good “.
And what kind of relationship does little Marco have with this Facebook page?
“It’s his life. He doesn’t read the messages but I read them to him and he can’t wait for them to arrive. With his augmentative language made up of signs and figures, he always expresses strong emotions ».
He smiles in every photo you take …
«Marco always smiles, from when he wakes up to when he goes to bed in the evening. He smiles with everyone, even if he is in pain. It is his strength ».
What other advantages has this virtual diary brought?
«A very close relationship was born with a family from Veggiano who have a disabled girl. I invited mum and dad to share more things on social media: it is right that people know that there are very tiring realities like ours, even if you don’t have to break down for this “.
And in real life, however, what does Marco do?
«He loves school, he loves contact with people. When the lockdown took place it was completely lost. He almost seemed to be in depression, then when he went back to class he was reborn. On Monday morning, his companions ran to greet him at the door. Everyone adores him ».
Other elements of happiness?
“Football. He is a Verona fan, a passion transmitted by me. When he sees yellow and blue, he is always happy. The footballer Faraoni sent us a video inviting Marco not to give up in the face of difficulties, telling him that the team still needs him ».
And now what messages do you dream of being able to share on Facebook?
«In the short term we plan to buy a van equipped to transport Marco thanks to a large solidarity collection. The Municipality and the Noi association have given us a great hand, we are already at an altitude of 42,000 euros ».
And in the long term?
«The doctors have told us that Marco will not be able to improve, but we are not giving up. And we continue to enjoy it every day ».