My name is Olivia Gray and I’m here to tell you about the Top 8 Challenge and why I invite you to take it with me. The” Top 8 Challenge” means to exclude the top eight common allergenic foods for the day or one meal. This means no milk, eggs, wheat, fish, peanuts, tree nuts, soy or shellfish. I’ll be taking it for the whole day on 8/8 but my 13-year-old sister, Bella, has to take it every day of her life.
Why you ask?
Bella has a rare disorder called eosinophilic esophagitis (EoE), which is an inflammatory condition of the esophagus. 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 5-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. It was several years later until I got to try eating an 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 it’s not the same as the anaphylaxis allergies 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 about it is it makes her sick a lot. She has to go to doctor and hospital appointments and has medications every day. I remember when she was 7 years old she had a feeding tube put in her stomach. For four years she was pumped a special elemental formula 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 the time came last year when she was able 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. That’s why my Mum, Sarah Gray, who started the charity, ausEE Inc., that supports those living with these disorders, came up with the Top 8 Challenge.
What better way to show someone what it is like living this day in and day out then having them experience it for themselves for a day?
I’ll be taking the challenge on 8/8, the day I’m reminded how challenging life is, and can be for all the people who have an eosinophilic disorder. That’s why I’m taking the Top 8 Challenge and that’s why you should too. The only way to destroy these disorders is to raise awareness and have more Australian research happen on it so they can find a cure. All of the money raised from the Top 8 Challenge goes to medical research to discover a cure and make the lives better for those like my sister who have an EGID. So please take the Top 8 Challenge on August 8th which is during National EOS Awareness Week 7-13 August 2016.
Go to the website today at www.top8challenge.com to join the challenge, donate and show your support for kids like Bella. For more information about eosinophilic disorders and ausEE Inc. please visit ausEE.
A version of this post appeared here in the Huffington Post