The story of Gaia
My name is Gaia and I am one of the few young patients worldwide affected by the Paediatric intestinal pseudo-obstruction, PIPO in short. PIPO is a rare, chronic, and disabling disease affecting children, characterised by a serious disorder of intestinal motility with alteration of the propulsive capacity of the intestine, i.e. the movements of the bowel muscles that push forward intestinal contents and gas (peristalsis). Let me tell you a bit about my story…
On August 18, 2023, I decided to surprise everyone and was born earlier than expected. Mum and Dad had to run fast in the car in the middle of the night during holidays, leaving my 2-year-old sister with our relatives, with hearts beating fast and the waves of the sea in the background. The usual three days in the hospital planned for mum’s labour and recovery became four extremely long months. During these months I survived two very harsh surgeries and I came across numerous blood transfusions and invasive tests and exams. After this long and dramatic period for my parents, doctors let me go home and for the first time, I met my sister Nina and could spend my first Christmas with my family.
Everyone says that I am very beautiful, that I am perfect like a doll, and that I always smile. I love life so much! I am curious, stubborn and strong as a little lion. Even if my disease is extremely tough to bear and doesn’t let me eat normally but only through parenteral feeding, I surprise everyone by growing very well and becoming a fatty, sweet and smiley 6-month-old baby. Of course, I would love to drink my mum’s milk, but – every time I tried – I got sick, my tummy hurt so much, I got short breath, then hiccups, what a struggle…! I hope that doctors can find a cure for me and all other little patients like me so that I can feel better and let Mum and Dad be happy again.
For this reason, my grandma wrote a very sweet children’s book – fully illustrated – telling magically and fantastically about my story. The revenues will support the Association Uniti per la PIPO (https://www.unitiperlapipo.it/), which collects funds for research and to support other families like mine. You can find it on Amazon at this link: https://amzn.eu/d/5AqOJwK. I strongly encourage you to read it with your kids, it will make you smile and see how much strength can come from love and hope in the future. Also, please spread the word with everyone! We need to collect lots of money for research so that genetic research can advance and PIPO patients can be healed.
Mum says that the “normality” we often complain about is the greatest wealth, that we need nothing else when we have health. Love is the greatest medicine and can save us. Still, medical efforts and research can change the life’s quality of us, little patients, and our families.
I thank God, Who gives us strength every day and I trust in Him.
And finally, thank you all for reading my story and to support me and all PIPO patients!