Samuel Catlosova

From Samuel, with Love.

I’m a super special baby. One in a million: I have a super rare genetic condition called Partial Trisomy 13. Like Ironman, I had a problem with my heart (and a hernia). But now it has been repaired. The doctors were very impressed with how quickly I bounced back.

I’ve always found it challenging to feed and very often it has caused me to vomit. But there’s nothing like an adversary to hone my superhero craft! Now, I’m even stronger than before! Especially now that my PEG gives me super energy directly into my stomach. And, after much practice and dedication, I’m now able to take puree multiple times per day. I’m a busy bee with lots of weekly and regular recurring appointments.

I’ve spent nearly half my life in hospitals, usually locked in perpetual mortal combat with my arch nemesis: the germs and the nasties. Although they are a tough foe, they can’t stop me from dazzling the world for long. It’s hard work but I’m becoming stronger day by day. My strength training involves lots of crawling, climbing and propping myself up to a standing position. One day I’m sure I’ll be able to stand unaided and walk. Additionally, to help me with extracurricular activities, sensory and musical apps on a tablet is an excellent carrot to dangle in front of me if you want me to do your bidding.

To avoid burnout, I make sure to have plenty of downtime. I love a good chew down on something sensory. Bubbles and performing peekaboo with blankets are great fun. I like relaxing in a bath on my royal throne.

Also, I’m a bit of a Tinker. I’m fascinated by anything with buttons and knobs with blinky lights. If I need anything else I will give you a holler, I’m still working on those mystifying words and sign thingies. Loud noises and disco lights are my kryptonite. But watching a tablet with music videos fixes that (plus plenty of smooches and cuddles). I enjoy songs with tension and increasing tempo with actions. Especially renditions of Wheels on The Bus or Old McDonald. I’m a superhero in training. 

I have the cranial helmet sorted out already for my costume and enhanced listening devices to help me snuff out crime. I even have a rugged new look with a scar on my nose for my adoring fans. I am currently attending the St Mary Magdalene Institute for Young Superheros. I’ve made many friends among my fellow classmates. They come and enthusiastically greet me when I arrive. They give me toys without me having to move a muscle and pile on the cuddles.

Geez, it’s tough being royalty. I’ve unearthed many talents. I’m made of stern stuff. I have boundless energy like a perpetual motion machine. No one can resist my cuteness. I’m inquisitive like a mouse. Nothing is safe from me. My teeth are as strong as steel like Jaws from the spy series Daddy likes. And I have powerful kicks. As I never skip ‘Leg Day’ like Batman from Daddy’s favourite Lego Movie (the opening scene). I have a surprisingly large family. My Mummy lights up my world when she dangles her hair in my face. Daddy has that irritating beard stubble that I seem to find strangely therapeutic. He loves smothering me in kisses/raspberries and throwing me up in the air. I hear a collective gasp but don’t worry, Daddy does it over the sofa to keep me safe. I look up to my amazingly talented Big Brother Freddie. I try to copy him during his adventures. He finds me things to play with when I wail at him (as any good servant should). He even graciously occasionally lets me play with his toys. We have great laughs watching Super Mario videos together. I’m not sure who laughs more.

Amy, is my feline familiar who is now able to bask in my majestic presence. I regularly keep in touch with my relatives, usually at Nana and Grandad’s pad. Nana has a fascinating contraption around her eyes. And I love to dip my toes in Grandad’s hydrotherapy tank. Auntie Laura thinks I’m gorgeous with big beautiful brown eyes. She loves how I play with my cousins. The community team, doctors and nurses are like my extended family. My name is probably recognised by every health professional at Barnet A&E and Galaxy Ward!