Growing up, 12-year-old Nick was never able to join a sports team or take an extracurricular activity with friends and his parents regretfully had to say no to summer camps and sleepovers because he has Type 1 diabetes that needs to be constantly monitored and treated.

Thanks to a pilot project that started in February, Nick has been making use of a continuous glucose monitor (CGM) which his mother, Patricia, said brought a sense of normality to the family’s life and more freedom to Nick, whose teens are on the horizon, in better managing his condition himself.

Like his father Rodney, Nick developed diabetes at a very young age and much of the family’s time has been spent on managing the condition, which has no cure.

“Diabetes is incredibly serious but most people underestimate how deadly it is,” Patricia said.

“Because it becomes a mundane part of our lives, we make it look easy but the implications are very serious. When you have to raise a child with diabetes, it becomes scary and complicated because the potential health issues and conditions that could arise if not managed properly are terrifying.”

In February, the government gave CGMs to Nick and about 200 other children, allowing them and their parents to monitor their blood glucose levels through a remote device or phone app, replacing the fingerstick pricking test which needed to be done more frequently and requires a sterile environment to be carried out.

However, the pilot project ends in eight weeks and the government has not indicated whether it plans to continue providing the devices, with parents now anxious to know what this means for their children and their future.

“I understand that healthcare comes at an expense but this isn’t something we are doing for fun. It is a necessity that has made our lives infinitely better and gave us back a little normality because we have more control on monitoring diabetes,” Patricia said.

“With the diagnosis, our world came crashing down. I was so scared for my son and how we had to restrict what activities he could do. We even stuck to having one child because I was scared. It’s such a huge emotional load. Just because we make it look normal, it doesn’t mean it’s a walk in the park,” she said.

“The CGM put my mind at ease. Nick is less dependent on others and he has more freedom to do the things he likes.

“If he wants to go for a walk I can say yes because the CGM is a constant reminder in taking preventive action.

“Diabetes can stop you from being normal and enjoying normal things out of fear. This is why the CGM is so important because it relieves you from having to be on your toes all the time.”

“Technically, we could live without it, yes, but at a significant cost to our quality of life.”

CGMs being given in the pilot project need to be replaced every 10 days and, at €70 per sensor, costs can run up to hundreds of euros a month if parents attempt to procure them themselves, which can also be logistically challenging as they cannot be bought locally.

The Maltese Diabetes Association is urging the government to make the devices available to all diabetes patients irrespective of age, bringing standards on par with other EU countries.