Me, Myself and I... Plus 5

Updated: Dec 2, 2020

WHO AM I?


I ask myself this question every single day.


"Who am I?"

I'm the mother of four kiddos, three of them with severe food (and non-food) allergies. For the past eight years I have been a full-time mother. Besides that my name is Vanessa, I'm 36 years old and I'm an Engineer. Sometimes I lose myself in my children's needs, until I quickly remember how blessed I am to have the privilege of being here for them.


I have been married for 21 years now, both my husband and I are asthmatic and have food allergies. This combination came to be the beginning of a long journey.


HOW DID THIS ALL START?


I met my husband Renato 21 years ago and together, we have four children: Matilde, Lucas, Alice and Mateus.


It all started with Matilde, within fifteen days after her birth we ​​discovered that she was allergic to cow's milk protein (CMPA). It was difficult ... It wasn't that long ago, but at that time (2007) there was almost no information. Each time I ate dairy products and I fed her it was like getting on a roller coaster. She was projectile vomiting, her skin was all red, swollen, and she suffered with diarrhoea. Fifteen days after she was born she had lost almost two pounds. She had a lot of tests, there were more allergies: soy, fish, eggs, fruits like peach, kiwi and nuts.


We had several bad moments, but our real nightmare happened when our daughter at six months, had an anaphylaxis incident and went to anaphylactic shock. She had to be resuscitated and was in a coma for three days. I was only 23 years old and I have never felt so powerless in my life. When she was nine months old she had another anaphylactic shock, and I remember the doctors around us completely baffled.


We rang a lot of doctors until we found one who told us about desensitisation (what we now call OIT - Oral Immunotherapy). In Matilde's situation and taking into account the reactions she had, it would be vital to decrease the body's response.


After almost four years of desensitisation, only a chronic lactose intolerance and allergy to mustard remained. She had some years where it stabilised. One day when she was with the scouts she ate a chestnut and started to have difficulty breathing her throat swelled up , she was 10. So our journey started all over again and finally in September last we founnd out that Matilde is allergic to LTPs* and Profilins**.


*Lipid Transfer Protein Syndrome is an allergy affecting people who have become sensitised to LTPs and they may react to vegetables, fruits, nuts or cereals) (Anaphylaxis Campaign)


*found in pollen, latex and plant foods


AND THEN WE HAD ANOTHER BABY!


Lucas was born premature at 34 weeks, after a very hard pregnancy that went bad after I had an allergic reaction. We only detected CMPA at 10 months when after eating a yoghurt he had an anaphylactic shock. One more son entering directly to the ER to be admitted. I remember saying it was not possible to live that all over again! He never reacted through breastmilk. So how could it be possible? But it was possible.


Meanwhile we decided to move to Belgium. Lucas was 15 months and was never 100%. When he was two years old and after blood work and skin prick tests we discovered allergy to soy, fish, eggs, nuts, cow's meat, peanuts, mustard, latex, insect bites and pollens.


We had our share of scares with Lucas. When he started to attend school, on the very first day I received a panic call from the school. After the third reaction, the school principal said that it was impossible for Lucas to live with other children. Our son reacts by ingestion and touch and she thought the best thing for everyone would be for him to undertake homeschooling.


It was at that moment that our life took a turn and I decided that at whatever cost, my son Lucas and all "Lucases" would have their right to go to school.


I made requests to the Ministry of Education, printed the Universal Children's Rights and the Right to Non-discrimination. I went with everything! I spoke loud and clear, for myself for him and for all who will follow.


Changes in procedures, training and lot of meetings were necessary, but we succeeded. Lucas continued to go to school and today he no longer attends that school, but everything works as when he was there.


OUR BLOG WAS BORN


It was at this point, after several friends encouraged me that I decided to create our blog. With recipes adapted to allergens but more than that where I share a little of us, our struggles... where I try to raise awareness amongst the community to help those who need help. Trying to make the world a more knowledgeable place for children with allergies to live.



AND ABOUT ALICE?


Alice is the only one without allergies. She is a child full of life and with a sense of responsibility for her siblings that moves us. She stands up for them, she's only five years old but she's determined. I was always afraid that she might feel less attention, because with her siblings we are always more alert. On the contrary, she has a personality that leaves no one indifferent; she knows her place in the family and the love we have for everyone. She´s our princess.


AND WE DECIDED TO HAVE ONE MORE


So... we always wanted four kids, so we did it again. Mateus was born in May 2018, after a miscarage. For the first few months we thought everything was fine...until it stopped. And two years later we have the diagnosis he has an egg IgE mediated allergy and has two rare allergies, Severe Enteropathy to proteins and Food Hipersensitivity and Mastocytosis. He has allergies to some medications as well. It requires monitoring and he has a very limited diet with only 10 safe foods! He continues to be breastfed because sometimes is the only thing he accepts to eat, which makes me have a very restricted diet. He has a full team working to making him stable. I believe one day he will be.


LIFE THE WAY IT IS


For all these reasons, I learned to make magic in the kitchen. I have always loved the peace I feel when I enter my kitchen. Now it's a challenge! Seeing their joy is a feeling of accomplishment. I make everything they eat.


But it's not enough ... More serious information, more knowledge, more awareness and less anxiety is needed. I want my children to have a happy childhood, as much as possible given their condition. And that will only happen if we speak as often as necessary.


It is vital that children are taught from an early age how to include a friend with food allergies. And that's why I wrote my first book.


GROWING HAPPY WITH FOOD ALLERGIES


Our book, for now only in Portuguese, was the way I found to explain to my son's friends what food allergies are, how it happens, how it's treated. The main character is Lucas, who talks with two friends and explains in a simple and fun way what his daily life is like. It's the perfect book for children with allergies and without allergies. Because a child with food allergies is still a child, they don't choose to born with allergies, they just want to to have friends and be happy.


WHY AM I HERE?


Stay around, I will be here, sharing my recipies with you, hoping to help you and give you some new ideas to surprise your kids on birthdays, Christmas, Easter... Hope you like it!


Image: Iara Pereira Santos - This is us!

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