Almost 4 years ago, our lives changed forever. This is our middle son Seth. He was only 3 years old when he was diagnosed with ITP. Something doctors told us is that we’d watch and wait as most kids grow out of it within 6 weeks. We’re still waiting.

One afternoon we were outside playing with the hose when we noticed a red rash on Seth’s bum. It wasn’t raised like a normal rash, but dark red dots underneath his skin. Almost like he was bleeding, except we couldn’t wipe it off.

We saw his GP the next day, had a blood test and a couple of days later the GP called and said “you need to pack a bag and get Seth to the emergency department urgently. I’m writing a letter now, call past the clinic and pick it up on your way. Seth currently has 6 platelets and his white blood cells are extremely low.” My heart nearly popped out of my chest, I couldn’t run around the house quick enough to get everything together. We honestly had no idea what was ahead of us or what this meant for our little boy.

January 2021 is pretty much a blur. We spent around 3 weeks in and out of the hospital where we pumped our 3 year old son with steroids and IVIG, and had numerous blood tests to check his platelet levels. Trying desperately to figure out what was wrong and to find a treatment that would lift his platelets to a safe level. Unfortunately, the hospital pediatrics team wasn’t able to tell us at the time whether or not he had ITP or leukemia. The symptoms are so similar and Seth’s white bloods cells had also dropped dramatically. Seth wasn’t responding to the treatment so we decided to head to the Royal Children’s Hospital in Melbourne. We spent 3 days there and Seth underwent a bone marrow biopsy which confirmed his immune thrombocytopenia diagnosis.

Seth’s been under the care of the Haematology team ever since. It was weekly blood tests for a while, then fortnightly and in the last 12 months it’s been monthly. When Seth’s platelets were 30 or above, he carried on normally. When they dropped below 30 he went into the hospital for 2 days of IVIg treatment to lift them again followed by constant blood tests to make sure his body continues to respond. Now, Seth is on a daily medication which has helped us keep him out of the hospital.

Seth continues to live a relatively normal life, he plays sports (carefully monitored by us) goes to school, rides his bike, but the fear and angst of “what if, or when” he might have an accident doesn’t get any easier as parents. We hope by sharing Seth’s story, we can help raise awareness for others.