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A Diabetes Story – Will we ever recover?

At the age of 20, I found out from a report that I had type 1 diabetes. Since then, I have always been thirsty; I have started to lose weight and go to the bathroom often. I felt tired every time, and I was even struggling to walk. Inside me, a voice told me that I was sick like my insulin-dependent grandmother whom I grew up with. But I feared a possible diagnosis.

Until one Sunday in May, I felt sick.

The next day, Thomas, now my husband, “forced” me to undergo some tests. The sugar levels were very high. The impact in the hospital was brutal. They showed me how to inject insulin; syringes were still used at the time. They told me: “If you want to eat, you must learn to take insulin!”. I didn’t eat that day. But then I had to accept it: three injections a day, in addition to the necessary constant sugar checks.

Two years later, I came into contact with St. John and began to be followed by the hospital’s diabetologists. I was given an insulin pump. Eating freely again was a great feeling.

The insulin I needed was regulated automatically.

Thomas and I got married, and on my wedding day, hidden in my white wedding dress, in a pocket, there was the microinfusion, now also my life’s companion. The first pregnancy also arrived. It was wonderful. Even before conception, we had spoken to the doctors, and they followed me to keep everything under control. It was a wonderful experience:

Sebastian was born naturally; everything went well, and he – is now 15.

We weren’t thinking about a second child, but a few years later, one day, I discovered I was pregnant again. My first thought was the disease! I hadn’t followed the checks done for my first pregnancy. My diabetologist followed me carefully every day to bring the values down and keep them low. I did not experience this pregnancy with the same serenity as the previous one. Philipp was born in the eighth month, hypoglycemic, after a difficult and particularly painful birth.

My worries went away for a while.

Philipp was a very good child, and everything proceeded peacefully.

One day in December, when Philipp was 1 year and a half old, while he couldn’t yet talk to me, he did something to make me understand that something was off. He was not sleeping well in the afternoon, and at night, I found him in his pyjamas, completely soaked in pee. I was scared and instinctively got a sample and tested his blood sugar. “HI” appeared on the display, indicating a very high value.

We rushed to the St John emergency room.

I couldn’t stop thinking it was my fault as we travelled those endless kilometres from Manchester to London. This was how we met Dr. Florence, a paediatrician, for the first time.

My son is 11 years old today; sometimes, he looks at me with those big eyes and asks me: “Mom, why isn’t Sebastian sick and I am?”. It’s difficult for a parent to explain something like this to their child, and then he says to me: “Yes, mum, I know, I’m like you, and Sebastian is like dad”.

Filippo has always been and still is a serene, happy child.

He asks me many questions but then goes back to playing with friends and dedicating himself to his favourite sport, hockey. The other children around him behave normally, know about his illness and treat him respectfully. Luckily, no one ever made him feel ‘different’.

Not long ago, Dr Florence told us a real story about a study that will start soon in England and be carried out in about five hospitals to test “artificial pancreas” in kids. They were looking for patients with Philip’s characteristics and age.

We were flattered to be involved and agreed.

The experience was amazing as the first meeting was quickly done in London and lasted only a week. For the first time, Philip met many other children who, like him, wore the microinfluor. He told me enthusiastically: “Mom, everyone here has diabetes like me!”. Children know that they have to learn to manage the disease; by playing and running, their sugar levels drop, and they must stop to restore their values. His friends at home – not understanding this need – always encourage him to get back to playing quickly.

However, everyone knew how to respect each other’s recovery time.

It was a strange and exciting feeling to see them so aware. For Phillip, it was a 5-star holiday. He made many friends, including Olivia, a year younger than him, with whom he established a very strong bond. A second experimental phase followed, and we hope this study will bear good fruit.

While waiting for research to find a definitive solution for this disease, today, finally, Phillip and I both live our daily lives with a sensor and an insulin pump that make our lives a lot easier. They are small devices, like cell phones or slightly larger, certainly a little intrusive, but they allow us to be much more serene and have less anxiety. Even Phillip has learned to see them as ‘companions’ who care about him, and we say to each other:

“Some people must wear glasses; we must wear microinfusion!”.

How do we see the future? Every time December 12th arrives, the date of the diagnosis, we think that Phillip has one more year of diabetes and all the problems that this entails.

This is also why we count the days until we find a definitive cure. We believe in research, and we are certain that the day will come when the disease will be defeated and we will be free from this disease, Phillip, Olivia and all the sick.

With love,

Valentina