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 on our own. It is expensive and time consuming, but we manage to book a pediatric ultrasound and, after very long 30 days, we finally obtain an appointment. Half an hour in the waiting room seems like an eternity and when the door finally opens, we enter with our heart rushing while Diego tries to calm us in his own sweet way: “lilli … lilli…”

We are in. Diego lies on the bed while the technician presses buttons and turns dials on the machine. The only sound is the rhythmic beeping. It lasts no more than ten minutes and we are out again. In our broken English, we manage to ask how Diego’s heart is, but the technician’s hands are bound: “Only the doctor can answer you. You will have the results within a few days”.

“Please, Madame…” we implore. The technician closes the door again with a look of understanding. She places her hand on our shoulders and says:”Don’t worry. Don’t worry.”

Tears begin to flow, but it is still not a liberating cry. The phone call from the doctor arrives a few days later. Diego’s heart is perfectly healthy and, if everything goes well, we will only need another ultrasound in a couple of years.

It is finally Christmas for us.

MERRY CHRISTMAS TO ALL!

tuttiperdiego!