- By JHT
Hello, my name is Darla and I am almost 4 years old. I have been coming to the James Hopkins Trust since I was 1. I had a very complicated start in life because I was born with a condition called tracheoesophageal fistula with oesophageal atresia – long words hey! Basically this meant I was born unable to swallow.
I spent the first 11 months of my life in intensive care and I have had lots and lots of surgeries. I have a plastic tube (called a tracheostomy) in my throat which helps me to breathe safely and keeps me alive. I also used to be attached to a ventilator for 24 hours a day, this helped to make sure all my breaths were big enough to keep my lungs open.
When I came home from hospital it was very overwhelming for my mummy and daddy because I had a ton of equipment which I needed with me all the time and I needed to be cared for 24 hours a day.
One day a nurse, called Susannah, came out to our house to meet me, she said they had never had a child at JHT before who was attached to a ventilator for 24 hours a day, but they were willing and happy to learn all about my ventilator and all of the care I needed. Soon I met a nurse called Emma, (she is my best friend at JHT) and she was happy to be my nurse and I was offered respite sessions with her.
It took my silly mummy a long time to leave me, she used to faff around getting upset and worrying about leaving me, but slowly she felt confident and happy to leave me with Emma so that her and daddy could go and do loads of fun stuff like pay bills, do admin, and go to appointments of their own.
I go to respite sessions every Thursday which I absolutely love. Me and Emma have loads of fun, sometimes I can get upset and angry and because I can’t talk and it can be hard to know what I want, but Emma figures it out and always manages to cheer me up- usually the sensory room or a ‘Sarah and Duck book’ do the trick.
I also have sleepovers at JHT ( well I don’t sleep much because I’m way too busy playing )this gives mummy and daddy some much needed valuable time to spend with my brother and 2 sisters. Life can get pretty hectic for them because I have lots of appointments to go to and sometimes I get really sick and need to hang out in hospital for a few days. My sister Madison absolutely loves bringing me to JHT for sleepovers and she always asks the ladies if she can sleep too. I think she likes to see what I get up to when I am on my respite breaks and then she doesn’t worry about me.
All of the staff know me and everyone is so friendly, it’s like having a great big extra family. I always give the ladies upstairs in the office a big smile and cuddle, because after all if it wasn’t for their amazing hard work doing lots of fundraising and making lots of lovely money, me and all the other children at JHT wouldn’t be able to come and play.
Some people can get a little worried when they hear the word respite and they may think that it’s a sad place to be. This is soooo not true. Me and my friends have a ball at JHT, we do painting, make cakes, play in the sensory room, hang out in the soft play room or go outside in the garden. There’s always tons to do and I am never bored. Mummy often says she never would have survived the last 3 years if we didn’t have the amazing help and support from everyone at JHT.
I guess there’s not a lot more for me to say other than to wish every single person at JHT both past and present a very, very HUGE happy 30th birthday!!!!
Thank you for the magic memories and for all that you do.
Lots of Love Darla and Family