PEOPLE STORIES

"Life is struggle: if you don't struggle you don't live!".   The experience of Max

I am Massimiliano, born 1975, I live in Milan, Italy, and I have Duchenne Muscular Dystrophy. In November 1994 I was sent to a specialized centre to have the respiratory functions tested: it was decided I needed ventilation at night via nasal mask.

The proper set up of the machine and the adaptation to ventilation required about six months: after that period the follow-up was rather satisfactory and the periodical check-ups didn't show particular problems.

 

In 1996 I joined the Milan branch of the Italian Muscular Dystrophy Association (U.I.L.D.M.) and started to play wheelchair hockey in the local team (Dream Team - Milano). In September of the same year, having suffered from stomach-ache, it was found I had some stones which might soon or later require the proper treatment.

 

On January 17th, 1997, I underwent the operation to remove these stones. The operation went well and my stay in the intensive unit care lasted only four hours . I had a sufficiently good night and the respiratory tubes were removed the next morning. Here started the problems: I had an acute respiratory failure and doctors said I only had few hours/life left. HERE STARTED MY STRUGGLE FOR LIFE.

 

On January 22nd I was placed on 24 hours ventilation via a tracheostomy in the intensive unit care; days went by but I didn't get any better! But in this period, something important happened: the association bought a ventilator for me to be put on my electrical wheelchair. The weaning from the unit care ventilator to my own ventilator started slowly but it finally did succeed!

 

On May 9, 1997, after four month from my hospitalization, I could leave the hospital and start to live again - with the tracheostomy, of course. This wasn't easy at first! I had to accept tracheostomy, suctioning of airway secretions, speaking difficulties, acceptance and training of carers.

 

On June 1997 I started to spend some time in the Association and to play wheelchair hockey. We played the play off of the national championship and I was very proud to receive the 2nd place cup! Since then my life has became very busy: important tasks in the Association, week-ends trips, evening outings, hockey-keeper, New Year Eves with friends, summer holidays.

 

This year - 1999 - has started in the best way: I had my first trip without my parents! I went to Paris with some friends and was happy to see that I could manage my life by myself.

I would like to say that I have won my battle for life and I would like to add that, to my opinion, LIFE IS STRUGGLE: IF YOU DON'T STRUGGLE, YOU DON'T LIVE!

 

This is my experience: the experience of a boy whose utmost wish is to have a long life and to do as many things as possible.

June 1999