Life-threatening allergies 'a disability'
Allergies and their related symptoms affect my family in every single possible way, which most unaffected people would not realise.
I am married with two children, Marissa, 5, and Braxton, 2.
Marissa has anaphylactic allergies to dairy, eggs and nuts, as well as allergies to various environmental things, including animals, pollen, dustmite and mould. She has also suffered from eczema (a symptom of her allergies) for her entire life.
When Marissa was a baby, she suffered an anaphylactic reaction to milk formula. She suffered her second anaphylactic reaction to peanut when she was 1, when she was being looked after by a carer. Her third anaphylactic reaction was two weeks ago, here at home. We had a food challenge in hospital and she had an unexpected delayed reaction at home the next day. I had to give her her epipen and call an ambulance.
This most recent reaction has been tough, as she is now at an age where she understands what is going on.
Allergies have affected us in the following ways, and I will be trying to keep this brief:
We can't take our children to restaurants or out for any takeaway foods. Just a trace of dairy, egg or nuts can put Marissa's life at risk. It is just not worth it.
At kids' birthday parties, Marissa takes her own food in a lunchbox. At school, she has a teacher aide dedicated to keeping her safe at lunchtime and morning tea time. Just a touch of peanut butter smeared on playground equipment could be fatal to her.
Marissa is often anxious. She only has a very select few people who she trusts to be looked after by. When there is a reliever teacher at school, she becomes clingy and doesn't like me leaving her, as she doesn't trust they will know how to look after her in the way she needs.
I could write a novel on my own anxiety. Let's just say my phone stays within reach when Marissa is at school. I have to mask my own anxiety for fear of passing it on to my daughter. I am trying to teach her to be aware, not scared, of her allergies.
We have to pay extra for allergy-friendly foods. I have to use a dryer instead of hanging her clothes outside as pollen gives her horrid eczema. I have to use the hot wash cycle to kill dustmites and to clean her clothes from the eczema creams we need to use.
We pay hundreds of dollars per year just for epipens - one to keep at school and one to stay with her at all times. The eczema creams seem to ruin the elastic in clothing, which means I have to regularly buy new pants for her otherwise they end up falling down!!!
We have to cover costs for transport to health appointments - paediatrician, dietician, eczema nurse, hospital visits for food challenges and a cardiologist, as she also has a heart condition. I have to pay for her medic alert bracelet which she must wear everyday at school while she is away from me.
I pay extra for things like bath oils, supplements, special chemical-free shampoos, chemical-free sunscreens etc. None of this is easy on a single income family with a mortgage. However, we do receive the child disability allowance from WINZ, thank goodness (this is $40 per week), although this only covers a portion of the costs.
I have paid for private psychological appointments to try to limit Marissa's anxiety.
It takes up at least two hours per day applying creams and eczema care. There is only my mother and my husband's mother to babysit, which they don't do often as it is an anxious time for them too in case she has a reaction.
I spent hours and hours filling out forms and having meetings before Marissa started school, to prepare the principal and teachers. We are so thankful that they have been very supportive and caring.
When Marissa started school she immediately started to react to dustmites from the carpet in the classroom - one day we ended up in the emergency department as her asthma got so bad. The school worked with me to change a few things which has helped, thank goodness. I thought for a moment that I would have to homeschool her.
This is a very brief overview of our family's health struggles. I myself have developed the same allergies as Marissa after she was born - adult onset allergies are rare but do happen.
My son also has allergies and eczema but we are very careful with him and I'm not yet sure if he is anaphylactic like Marissa. We are about to start immunotherapy for Marissa's dustmite allergy which will cost about $1000 a year. I'm not sure where this money will come from but if it helps her eczema then I will find it somehow.
Allergies and anaphylaxis are not recognised as seriously as they should be in New Zealand. At the very least we need epipens funded and on-hand in every school. We need more emotional and financial support for this condition, which is not only life-threatening but a disability in many ways.