My sister Bella has a rare disorder called eosinophilic oesophagitis (EoE), which is an inflammatory condition of the oesophagus. In Bella's case, it means she is allergic to most foods and has been her whole life.
I want to tell you a little about what it has been like for me having a sister with this disorder.
My favourite weekend activity used to be going fishing with my Dad and my favourite dinner was battered fish. Not many five-year-olds could have witnessed the consequence of just eating your favourite meal. My only memories are of the sound of the ambulance siren racing around the corner and my sister lying on the couch with puffed up cheeks. It's hard to realise she could have died that night.
It's not the only time it happened either.
When I was a one-year-old, I went on a trip in the ambulance van with Bella because she was having an anaphylactic reaction to egg. I don't remember that night, but I know we stopped having eggs in the house after that day and it wasn't until several years later that I got to try eating egg. I do not like the taste of egg at all -- in fact, just the thought of what it could do to my sister makes me cringe.
EoE is a very complicated disorder. I don't really understand it. I know that it's not the same as the anaphylaxis allergies that Bella has and I know it is a type of eosinophilic gastrointestinal disorder (EGID), and that's even harder to explain to you. What I do know is that it makes her sick a lot. She has to go to doctor and hospital appointments a lot and has medications every day.
I remember when she was seven she had a feeding tube put in her stomach. For four years she had a special elemental formula pumped into her stomach while she slept at night. She had to have it at school lunch breaks too. I'm proud of how well she handled having that feeding tube -- I don't think I would have coped with that.
I'm happy to say that the time came last year when she got to have her feeding tube removed. She decided she would start drinking the formula instead. I've tasted it and it is not nice. Again, I don't know how Bella does it. She is an inspiration to me.
Bella has taught me a lot of things. She hates it when anyone says "I understand". We have a lot of fights about that. No one can understand what it is like living with a disorder like this unless you have lived it yourself.
The only way to destroy these disorders is to raise awareness and have more Australian research happen so they can find a cure.
On August 8, Olivia will be taking the Top 8 Challenge, which means excluding the top 8 common allergenic foods for the day or one meal. You can join the challenge or donate here.