I was my parent’s first child and was born 8 weeks premature, weighing 3lbs. My mum tells me that I was a fussy eater and drinker from day one. I was diagnosed with GSD3 a few weeks after my first birthday, as my mum was worried about my large tummy. I was admitted to Great Ormond Street Hospital for about 10 days and had a nasogastric (nG) tube fitted. My dietician put me onto two-hourly feeds and an overnight feed through the tube in my nose.
Moving onto corn flour
The first few years were very tough for me as my mum went back to work and my granny would look after me through the day. My granny would ring in tears to my mum when I’d have a hypoglycaemic episode, as I wouldn’t eat properly. Then corn flour was introduced into my diet and it was like a wonder drug for my parents as I went from two-hourly feeds to four-hourly feeds.
When I turned 3 years old I started full time nursery and I had a new baby brother. Luckily he did not get my condition. I was so happy when he arrived! In the mornings any rushing around would make me sick and I would have to eat my breakfast all over again making me late for school. At primary school my teachers were trained on how to use my nG tube (then later my button) and how to deal with my hypos and how to check my blood sugars.
My superhero arrives
This is where my superhero came in. Her name was Mrs Kula. She would sit with me helping me check my eating (and adding to my note book kept at school) as I would eat my food. This way my mum could check how much I had eaten that day. She would then give me my corn flour feed after playing. She did this job for me Monday to Friday. In Year 6 she started to train me on how to do my corn flour at lunch, getting ready for high school. In the summer of 2016 just before I started high school I had learnt how to measure my feeds and how to take them.
My baby sister also diagnosed
In July that summer my baby sister was born! This is where our lives changed forever. My sister, at just ten days old, was diagnosed with GSD3. My parents and family were devastated. I felt that this was my fault, but of course it wasn’t. In order for my mum to cope she has taken a career break to look after my sister.
Let’s skip forward to my present life. I am now in Year 9 knowing how to make my feeds and how to take them. My sister is now starting to get corn flour into her diet and has started nursery. My brother, the annoying person, is now in year 6 and has learnt how to give my sister and me our feeds via our tubes!
It’s OK to have a GSD3
This is my story. I hope you have learnt that it’s OK to have a medical condition like GSD3. Yes, there were problems along the way, but with family support (especially from my mum) we have managed well so far in my life.