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When no one believes your child has a deadly allergy

by Kristin-Lee Campbell - 04/11/14, 12:00 AM
Kristin and her family. Her daughter Ruby has a nut allergy, and son Weston has an egg allergy.

Kristin and her family. Her daughter Ruby has a nut allergy, and son Weston has an egg allergy.

It was a normal Thursday night. We had been through the normal routine – dinner, bath and time to wind down. We had chocolate in the fridge left over from a family gathering, and we shared one tiny square with each of our three children. Within minutes my husband was holding our daughter in his arms as she swelled, became limp and struggled to breathe.

From that moment on, our lives changed forever. Just six short weeks later, while navigating our way through this new-found nut allergy, the unthinkable happened. At home on a Sunday morning while making a cake, we relived the same scenario. This time not with our daughter, but our baby boy - he had been given a small amount of cake mix from a spatula that contained egg.

His whole body was covered in hives, his eyes swelled shut, but he didn’t cry - I remember he just lay in my arms until we reached the hospital and the medication was administered. At that point I have never been more thankful to hear a child cry - it meant he could breathe and my little boy would be okay.

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Weston, suffering an allergic reaction.
Weston, suffering an allergic reaction.

The research and waiting began. We live in Wagga Wagga, a town of around 70,000 people. We struggled to find a doctor that could help and were on the waiting list for the public system, but we were told it could take up to 18 months just to have an initial consultation. My heart broke thinking that no one could help us. The information was very sparse, so I spent hours on the internet and the phone and finally found someone who could help... but they were five hours away in Sydney and worked privately.

We had our first appointment and were overloaded with information, nose sprays, clarantyne, epi-pens, creams, and puffers. These are the things that keep my children alive and are now part of our daily routine. But they come at a large financial cost.

I have been called a lot of things since dealing with my children’s allergies - a control freak, a helicopter mum, even a liar, or that my children are just fussy eaters. This used to hurt, but not until you have held your child in your arms not knowing if they will ever get the chance to take another breath, or felt guilty for giving your children so much medication, covered them in cream from head to toe just to provide relief, spent hours upon hours in the kitchen making cupcakes so your child can take part in a birthday, turned down lunches, dinners and get-togethers because you know that your child will be excluded once they arrive, wondered if your child will ever know what the feeling of being 'normal' is can you understand how my family’s world has been turned upside down and how much the opinions of negative people don’t matter.

I have spent nights beside their bed just listening to make sure my children’s breathing stays regular and, although I’m not religious, I prayed to God that I could take it all away or even that the food that is meant to nourish them no longer poisons them. Sometimes it has taken an anaphylactic reaction from one of my children for people to understand the severity of the situation.

We attend an amazing Good Start daycare centre that is nut and egg-free. It is the one place I can send my children and know that they are safe and in the hands of trained and caring staff. The only other safe place is home. We choose to live in an allergen-free house and never ever do we allow any food or drink that contains their allergens to be consumed there. The risk of cross-contamination, stress and anxiety is too high because the smallest trace amount could possibly kill our children.

It’s not all doom and gloom. We have an amazing support system of friends and family, and other than allergies we have three healthy kids. We hold out hope that more money will be spent on research and that specialist medical help will be closer so that our children can grow up to be adults and not only be educated but driven to face the world without fear.

Kristin is a guest on tonight’s episode of Insight at 8.30pm on SBS ONE, which explores allergies and asks why are more people being diagnosed with food allergies and is a cure a realistic possibility? #InsightSBS

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