Two of our young CNZ Members are going the extra mile to raise awareness of Coeliac Disease this year with a week of activities planned at their Auckland primary school. Timed to coincide with Coeliac Awareness Week (June 11-14) these community minded, budding educators and entrepreneurs first shared their ideas with the Deputy Principal back in February knowing that each year, Royal Oak Primary School likes to have a fundraiser to support an initiative that is topical or important in their wider community.
Both coeliacs themselves, sharing almost 10 years’ experience with the disease between them, our Youth Ambassador, Sophie Walter (10 years old), and her friend, Hugo Reade (9 years old), have been hard at work planning and promoting their big week which includes a blind taste test for the principal and teachers at assembly, a QR Code learning trail around the school for students from years 0-6, a gold coin donation mufti day and a 100% Gluten Free bake sale on Friday 14th. All money raised will go towards the trials of Nexvax2® - a treatment designed to cure coeliac disease – something both these kids are extremely passionate about.
“I hope that one day they find a cure for Coeliac Disease so that I can eat whatever I want. In the meantime, I would just love people to understand more about living with Coeliac Disease, so I’m excited about raising money and telling people our story”, says Hugo, who’s had coeliac disease for four years.
After nearly 6 years as a Coeliac, Sophie says she is pretty used to it all now, but she too is hopeful that at some time in her life she will not have to read labels and think about everything she puts in her mouth.
“I would love to be able to eat normal food again and not have to take my own GF bits with me to parties, although half the time my friends think my GF food looks nicer”, says Sophie, who is also the face behind YouTube Channel GF with Soph which aims to support kids like her growing up with Coeliac Disease.
The pair have also set up a Give A Little page so those outside the school community can support their fundraising efforts. If you would like to donate to help find a cure for Coeliac Disease, please click here
CNZ Member Hugo Reade:
• What do you do in your spare time? Origami and any kind of craft, surfing and biking.
• When were you diagnosed? Via Biopsy in Feb 2015. The biopsy also confirmed EoE so I can’t eat dairy either because of that.
• What symptoms did you have before you were diagnosed? I was exhausted, pale, and I had no energy for anything. My brain felt foggy all the time and I was super emotional. Sometimes I got sore tummies too. The numbers on my blood test were off the chart. It took me 18 months to get them back in range.
• What happens now when you accidently eat gluten? My tummy gets really sore and crampy. My brain goes foggy and I feel very emotional. I have ‘melted poos’ for several days afterwards. My parents give me charcoal tablets which help a bit but mainly I just have to wait it out.
• What are your fave GF Foods: Pizza, burgers, Mum’s baking, omelettes, roast chicken.
• What are your fav places to eat? Burger Fuel, Hell Pizza, Pita Pit, the Chosen Bun, St Pierre’s, Corner Burger, Burger Burger.
What are you grateful for? Hell being in the CNZ Dining Out program because it means I can always have safe food at birthday parties if they are ordering takeaways. It also means I can have safe takeaway food most places in NZ.
CNZ Youth Ambassador Sophie Walter:
• What do you do in your spare time? Sport, sport and more sport. I also love listening to music and anything to do with water/swimming – my parents think I am a fish!
• When were you diagnosed? Via Biopsy in 2014.
• What symptoms did you have before you were diagnosed? I was very tired, and my emotions would swing from high to low very quickly. I had a sore tummy most of the time and I vomited a lot. I also had eczema and was a very fussy eater as food made me feel really gross.
• What happens now when you accidently eat gluten? Usually I will vomit but my tummy gets really sore and crampy for about 3-4 days. I am exhausted, have no energy and struggle to concentrate so I can’t go to school for a couple of days. My parents give me Nurofen or Pamol for the pain, but you just have to let it run its course and get out of your system.
• What are your fave GF treats? Molly Whoppy GF Choc Chip Cookies, GF Muffin Splits with peanut butter, Wallaby Bites, Pam’s lollies or Fruit Bursts and my latest fav is homemade donuts using the Free From brand of Vanilla cupcake mix
• What is your fave GF takeaway option? It’s too hard to pick just one. I love St Pierre’s, Burger Wisconsin, Hell Pizza, Bamboo Kitchen, Thai Archer and Wok n’ Noodle.
• What are you grateful for? Countdown’s Free From range of GF products which are awesome and taste great (Crossed Grain Logo Partner) PLUS St Pierre’s for doing a GF Teriyaki Chicken as I love sushi and it is awesome to know it is always safe for me to eat there. I just wish there was one closer to home - Hint Hint St Pierre’s!!
Throughout Coeliac Awareness week, (like Sophie and Hugo!) we encourage all our members to get involved – keep an eye out for local events and activities and more conversations about Coeliac disease and gluten free living. To learn more, connect with us on the Coeliac NZ Facebook page.