The new drug seems to be working. After four months the doctors are noticing small improvements both on the physical and the cognitive front, but another issue is worrying us increasingly. The electrocardiogram worsens by each visit and leaves us with the agonizing question of whether the disease is debilitating his heart. We keep asking for more tests, but our requests are regularly denied because the Protocol does not cover cardiovascular complications. This means we are...
febbraio 10, 2016 | Comments: 0
New tests for the great Diego: deep sleep analysis. We spent a night monitoring his sleep to understand a new symptom he is developing. Everything runs like a smooth machine, but the final bill is mind-boggling: $4,500+tax. It is indeed over-the-top, but we cannot stop and go full throttle
The first month of therapy was intense and there have been plenty of difficult moments. Our little buck has had to undergo the dose calibration of the experimental drug, which obviously came with all sorts of side effects and, at some points, a possible worsening of the disease. We have not let our guard down!! We started a new series of tests that make us worry as much for the results as for the “dark side” of the American Health System. The period was difficult...
febbraio 10, 2016 | Comments: 0
September 15, 2015 If I think how hazy this project was… Not knowing where to turn… It’s like having flown to the moon riding a beautiful dream. They are waiting for us at the hospital. A new day of testing. The test results tell us that Diego made it to the clinical trial. Happiness prevails and now anxiety is almost zero, most likely because of a deaf eighty-year-old interpreter that we cannot really understand. It is now 9AM and, as promised, the new drug is...
We are settling in Houston. It is a different world here for us used to our small Pian di Sco. Houston is really extensive and you basically move only by car because of the oppressive heat. People from all over the world, many languages, many different flavors. Here new friends and friends of friends are helping us with valuable advice. We miss our Italy which we say goodbye and not farewell, but we are also happy to throw us, united, all for Diego, in this new adventure....
febbraio 10, 2016 | Comments: 0
Being able to put in suitcases our all lives is not easy. Years of things bought together, things for our little house in Italy which we had just finished to pay after so many years of sacrifice; things bought for Serena newborn, and then to Diego; toys, small books, gifts from relatives and friends. Too many things to get in 4 simple suitcases. We decided to bring only the bare essentials: few clothes, some memory and little else. The most important thing I will take with...
Another small town that is mobilized for our little Diego! This time is Faella (Ar). Friday, July 24 at 20.30 in Piazza dell’Horme as part of Faelles’s Summer e will hold a solidarity dinner with the beautiful title “Forza Diego, I believe
febbraio 10, 2016 | Comments: 0
Only two words to thank all about wonderful dinner last night at Giovediamoci of Campi Bisenzio. Many, many people who came from afar to show their affection and their closeness. We felt surrounded by a giant hug. As I said last night on stage, from the dark of desperation, it is likely to close themselves and feel deeply lonely. However, last night, we know we can count on many many friends. Thanks again. For
febbraio 10, 2016 | Comments: 0
To give a chance to our little Diego we were ready to sacrifice everything: we had to leave our works, leave our home, our friends, and all our family safety has been jeopardized. We had very little time to completely rebuild our lives in a whole new country, of which we knew nothing, not even the language. It was (and it still is) all very complicated, some difficulties at times seemed almost insurmountable, but when courage seems to be lost, when the mountain looks...
febbraio 10, 2016 | Comments: 0
We are his family: the dad Cristian, the mother Ilaria and his 13 years old sister Serena. Two years ago, when Diego was diagnosed with the disease, our world literally shattered in front of our eyes. To find out about our baby disease was a terrible experience in which the initial disbelief was followed by anxiety and fear. Accept the prognosis was not easy, but we reacted and began to get informed about what was going on in Diego’s body. We began to look for more...