Lucy Stewart Born with Tracheoesophageal Fistula and Oesophageal Atresia or TOF/OA

Hi!
My name is Lucy Stewart, I am 9 years old. (2020)

I will be cycling 26miles with my big sister in less than 6hrs hopefully. I would like to raise money for Dr. Grays’s children’s ward and also the parent’s accommodation at the Royal Aberdeen Children’s Hospital.

I was born with a rare condition called Tracheoesophageal Fistula and Oesophageal Atresia or TOF/OA for short.

What it means is that my food pipe wasn’t connected to my tummy and my windpipe was connected to my food pipe, confusing, I know! I had a big operation to correct the connections when I was 1 day old at Yorkhill Children’s Hospital. Although everything was put back to the way it should be my windpipe was very floppy and sometimes I would scare my family but stopping breathing because of it.

Also, my food pipe doesn’t really work very good and where they joined it together gets very narrow so food gets stuck and I can’t swallow anything, which isn’t good! Because I was always unwell and had swine flu, pneumonia lots of times, chest infections, collapsed lung, and other not so nice infections then I have chronic lung damage and also a gastrostomy button in as I cant burp or be sick thanks to another operation I had to get. I have been at lots of hospitals as my dad is in the RAF. Mainly Hull Royal Infirmary and Aberdeen Children’s Hospital.

I do lots of medicine including my nebulizer and chest physio to keep me well, but it doesn’t always work. I spend and have spent so much time in the hospital. Most recently in December 2019. I was taken in the ambulance from our local hospital in Elgin to the children’s hospital 70 miles away as I got food stuck and became unable to swallow. For 3 months I was fed through my gastrostomy button and spent most of my time in hospital as the ability to swallow never came back and I wasn’t tolerating the feeds.

I was bringing up lots of clear fluid, waking up in pain, not able to go to the toilet, and losing weight.

The ARCHIE Foundation made these times so much easier for me and my family. They had play staff and different entertainers in the ward, gave my mum accommodation so she could be close to me instead of almost 2hrs away, helped cheer me up when I was sad and decorated the wards in a happy way. That’s why I am fundraising for them. I would like to help them help other poorly children and families.

Please help me reach my target. It means a lot.
I am able to swallow again, it is sometimes still sore and a little difficult but much better than it was then. I am still on a lot of medicine and have checkups all the time but I am just happy to be home with my family and able to eat again.

Thank you for reading my story.