Oscar’s story

Oscar is five years old and has sadly grown up with the knowledge that any food he eats could harm or even kill him.

Crystal, Oscar’s mum is no stranger to the world of living with multiple complex conditions as Oscar’s older sister Seanna also has several allergies and associated conditions.

“Because of his sister Seanna and our extreme allergy journey with her, I knew what to look out for in Oscar regarding food allergies and intolerances and the other complex issues that can arise as a result. Unfortunately, like Seanna, Oscar showed signs of food allergies and intolerances from birth.” Crystal said.

Oscar developed FPIES , like Seanna, which requires emergency room treatment.  In Oscar’s case it caused extreme vomiting and his little body would go lifeless as a result of the fluid loss and extreme lethargy.  He also had an allergic condition that would cause him to choke.

“There were many times I didn’t think he would make it until the ambulance arrived.  It was so scary to hold his silent lifeless body of the wrong colour.” added Crystal.

From birth Oscar has had many episodes where he is unable to control his body temperature, which at times made him hypothermic.  He will turn very pale, grey/blue and just slow down. These episodes have on occasion led to what they believe is a seizure, but sadly the reason why remains unknown.

“Oscar and I were traveling in the car recently and he was singing me a song when he just stopped and collapsed. He was held up in his car seat, otherwise he would have just fallen to the floor.  He was completely limp and unresponsive.  It appears now that it could be linked to him getting a virus, and just before that virus is evident his body goes into shut down, like he is having an allergic reaction to the virus occurring in his body.”  said Crystal.

Oscar fatigues very easily, which now he is five, they attribute some of it to low muscle tone and his incredible hyper flexibility, and he is developmentally delayed as a result.

Unfortunately, so many of Oscar’s conditions cannot be explained or tested for, and so many of his triggers are only discovered through trial and error.  This means treatment is very reactive and any precautionary treatment very difficult.

“We keep being told by the Doctors that in 20 years we may get the answers that we need regarding my children and their allergy journey. That we will look back and go, aha that is what they had. It is a drop in the ocean at the moment in regard to knowledge around allergies, and they are discovering more and more and getting more and more bizarre cases or cross over cases like ours.” added Crystal.

Despite everything ‘Oscar the brave’ (as he quite rightly refers to himself as) has been through, and his many visits to hospital for uncomfortable and sometimes painful procedures, Crystal is amazed that he is never scared to go, and in fact will always look forward to an appointment.  She put this down to the incredible ‘Greet Team’ who are always on the other side of any test, procedure, treatment or appointment.

Crystal said “I actually have five years of photos of Oscar growing up in the supportive environment of the Green Team.  I remember days that were super hard, and they would always help me through.  Oscar even asked to meet up with the Green Team for his birthday this year! Amongst all the trauma and darkness, the joys and sunshine that comes from the volunteers and staff shine away any darkness and puts the yucky experiences to distant memories for them. His favourite huggle toy that must sit on his bed or go on scary treatments or tests with him was given to him by the Children’s Hospital Foundation. They are deeply cherished.

It isn’t just the children either, it brings me and our family joy to see them too.  I know I have support when I need to take a break and catch my breath from what I just experienced or went through and the kids are laughing again because they are surrounded by familiar and friendly faces that bring them joy and happiness and a whole lot of attention! It certainly helps to lighten my load.”

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