Twinkle's story...

Every star shines differently…

 
Hi, I am Twinkle Lo and I have a condition called short bowel syndrome (SBS). From the moment I was born it was chaos and I was rushed into surgery as I had germs and an infection in my small intestine, which caused it to shut down and turn black. And if you thought that was enough chaos, well you are mistaken because my twin sister Macy had spiked a high fever and needed instant treatment.
 
My diagnosis came on day two of my life and this left my parents feeling heartbroken. I had to stay for an extra three years in hospital whereas my twin was discharged after about a week and got to see my older sister and grandma. After a year of being in hospital, I was allowed out of hospital for 4-5 hours to celebrate my first birthday with my family – yay! I didn’t mind staying in hospital as I didn’t have to go to school for a while and I got lots of presents including teddy bears. The hospital had lots of fun toys and a play area along with electronics!
 
I was discharged when I was about to turn 3. I went home and celebrated with my family! I eventually learnt to walk and started going shopping with my parents at the age of 5 and even learnt to do monkey bars.
 
My family moved from Hong Kong to England on the 11th of July 2022 and we celebrated my 6th birthday in Legoland. At first, me and my sister hated it in the UK as it was too cold in the winter and too hot in the summer. But fortunately we got used to it and enjoy life here. Ten days into life in England, we found a hospital for me to have checkups and care under all thanks to a lady called Carolyn Wheatley from PINNT. I had to have surgery again as my Hickman line burst and so I had it changed from my left side to my right side. Luckily my 6th birthday was celebrated about a week after I was discharged so I was happy! While I was waiting in the hospital, I was assigned to Lloyds Clinical who supply my TPN and all the ancillaries etc.
 
I had a gastrostomy, a tube entering my stomach, as I got older. I had to change the size to make it longer and thicker.
 
When I started primary school, I didn’t want anyone to find out about my feeding and tubes but now my whole class knows and even my friends and teachers, but I don’t mind as I wanted to share my story like I am with you!
 
Right now I am 9 years old and I know how to change the padding on my gastrostomy and set up my TPN – but with mom watching.
 
Hopefully I can share more in the future. But never forget that everyone is unique in their own ways and every star shines differently.
 
Never give up.