Search
FLOUR, SUGAR AND TEAR ICING
DISCLAIMER: This is not a normal fairytale, proceed at your own risk
Once upon a time, there was a king and queen, Luigi and Carmela, who were very popular and adored throughout the land. During a rainy day in November, Carmela gave birth to princess Greta (me!) marking a joyous and unforgettable event. It was 13th November 2009.
A few months later, starting from February 2010, the king and queen started noticing that strange, almost occult things began happening with me. I would zone out, pause as if someone flicked a switch, before going back to whatever I was doing. They went to our family doctor, explaining what occurred. There were no other signals showing something weird, I was acting and growing (and eating!) like any regular 4-month-old should. So, their initial reaction was to attribute it to my very young age, and, not convincingly at all, “reassured” the king and queen that these symptoms would pass with time.
And that wasn’t even the worst of it. As the symptoms progressed, my eyes would jerk side to side uncontrollably, as though I was possessed, becoming more frequent as time went on. Sometimes they would last a quick and (relatively) merciful 30 seconds, other times they would drag on for 2 never-ending minutes.
In those 2 never ending minutes, the king would use his 20th century camera to record me performing in this wonderful show, as evidence for the target audience of doctors. Note: acting is one of my favorite hobbies, and this was the 1st official tragicomedy which I starred in, so, of course, it had to be immortalized!
So off we went, bouncing from hospital to hospital, armed only with the dwindling, maddening hope of getting an answer. Of course, the quest, and the story, would have been extremely boring if the goal had been achieved immediately, which didn't happen.
As with the frequency, the weirdness of the king’s and queen’s behavior also increased. It happened during my baptism, a friend’s wedding, or nights out, that my eyes would flick, and the king and queen up and suddenly left all of these events and their friends and relatives, without so much as a word of explanation, because my condition didn’t have a name yet, and they didn’t want to alarm anyone.
The king and queen ran to a safe place, where I could breastfeed. It was like a magic potion to interrupt this incessant eye movement, and calm the queen down, because I turned out fine. These moments were like the secret chambers of a castle, keeping us safe and hidden from the rest of the world.
Mom and dad still harbored the (somewhat childlike) hope that a wizard would wave his magic wand and bring everything back to how it was. But the wizard did not show up. At this point, it’s safe to say that we weren’t in the castle any longer.
Things were not going as planned and as expected. I was not in a good condition and we did not why and what was it. Mom quit her job. During summer, we flew to Sardinia for a holiday, to try and get our mind off it all, perhaps the sun and the sea would do me good. It was a blistering hot August 15th, in a large and too amassed place, and I kept slipping in and out of absence crises, so many we lost count, resulting in staying at a hospital for 10 days. This hospital harbored suspicions and conducted some tests with the EEG, showing signs of epilepsy. Several medications in different combinations were tried, without results. Everyday we all hoped that things could go better, praying one of the medications might work. Unfortunately, this was not the case as I could reach more than 80 crises per day. While I was sharing my hospital room with mom, dad used to spend his time on an internet point searching for anything and everything that might shed light on this. “Epilepsy” and “Eye movement disorder” and “Absence”. After long searches, his then best friend Google returned some European scientific papers which could fit my case. These papers were pushed aside for the time being, because the top priority at that moment was to go home.
We had to fly back to the mainland in, no joke, the plane used by the President of the Republic and the Prime Minister. This was the first flight in my life. Obviously, a princess can’t fly economy class in normal planes like her subjects. If she has to go somewhere, she has to do it with style, it’s common knowledge. If the airplane was top class, well, the destination was not. I landed in a hospital again, and was dismissed after 1 week with yet another drug combination. Guess what? Yeah, this one didn’t work either.
At this point, the vacation (well, if you could call it that), was over. Dad had to return to work, mom stayed at home with me, gave me my ineffective medicine, and kept a log of every single crisis I had.
Out of the downloaded papers - there were written in several research centers spread across Europe - we picked the one closest to Rome. Desperate and in need of answers, mom and dad booked a visit. They told the entire story (well, obviously not the presidential plane) and showed him the videos with my performing skills. The doctor harbored some suspicions about what on earth I could possibly have, and asked to take my blood for a genetic exam. We said “see you soon” and silently we drove back home.
12th of November 2010, one day before my 1st birthday. Everything was ready for the celebrations, my grandparents had travelled all the way from the South to celebrate, the room was decorated top to bottom princess themed, and mom was in the course of preparing a princess castle cake with cream, chocolate, sugar, sprinkles and who knows what else. Kitchen looked like an atomic bomb of flour exploded right there and then.
The phone rang. It was the doctor with the diagnosis.
G1DS.
Tears added up as icing on my 1st birthday cake.
What changed after that fateful phone call?
For starters, I became a princess again. I have been on the ketogenic diet for 14 years. The good news is that since I started the diet, I never experienced any absence crises or eye twitching again. The bad news is that my 1st birthday cake also turned out to be my last one (well, that’s not as bad, because cheesecakes exist, thank God). A prince, my brother Luca, was born with the mission of being my bodyguard, like any self-respecting princess. There is much more awareness than 14 years ago, when I was diagnosed. We have an Italian parent’s association that cares about us and about our future. There are research projects, with doctors looking for a cure. There are companies (thanks Kanso) that make our keto food look good and palatable. If one asked me “what are the advantages of the ketogenic diet?”, I would say that, in short, the ketogenic diet is my magic potion. It’s not only my daily nutrition, but it allows me to learn, to travel, to dream, to live. It’s an inseparable travel companion, even though it’s rigorous and severe, demanding nothing short of complete and utter discipline. The crises are always a cloud looming over my head, with the knowledge that they’ll come thundering down uncontrollably if I don’t follow my diet.
And us? We moved to Germany, mom and dad switched jobs. The goal was for Glut1 not to bring us from hospital to hospital, rather into a place to live well and happily. We wanted that a life with Glut1 would allow us to do things we never would have dared to do in a life without Glut1. Unfortunately, there are more and more newly diagnosed persons with Glut1DS and my humble advice is to always have optimism. Even if Glut1DS seems more disorienting than the Labyrinth now, today you can always try to find the exit. Give meaning and do not give up!
Greta
Interview with an alien
In this article, you will learn how the rare genetic disease GLUT1 works from the unique perspective of an alien researcher. Through an insightful interview with Greta Caravita, one of the few people on Earth affected by GLUT1, it is explained how this disease affects daily life and what adaptations are necessary. The viewpoint of an alien offers a special and fascinating opportunity to understand what living with this condition conveys.
Starting the Keto Diet: One Step at a Time
When you receive a diagnosis of a rare disease for which there is no medicine to make it disappear, you feel like you're locked in a dark room. But when you're told that there's a therapy that can mitigate the effects of the disease, that's when the light returns...