My 11 year old son, Connor, was recently diagnosed with ITP in June this year. He is currently into week 6 of his diagnosis. Connor first started showing symptoms a few weeks after he contracted Pneumonia. 

His legs and arms started showing quite significant bruising, and petechiae popped up around the bruising and over his chest. He also had quite a big haematoma on his shin after playing soccer with his friends. I didn’t think his bruising looked right, but at the same time, he was well within himself; he looked and felt fine.

However, I went with my gut feeling and took him for a GP consult, who sent him for blood tests.

Later that night, we received a phone call from his GP advising us to go straight into the Emergency Department. Connor was admitted under his Paediatric team and required further testing to exclude other potential diagnoses. I think this was the scariest part: waiting for that diagnosis to come back.

We thought we might have to head to Brisbane, as we live in Central Queensland, so waiting for results was quite frightening. After his bloods & film were checked by the Paediatric Haematologist at the Children’s Hospital in Brisbane, his diagnosis came back as ITP.

We still did not really understand the diagnosis or what it meant until we followed up with the paediatric team the next morning.

Fast forward 6 weeks, Connor has good and bad weeks, and we think this is very normal for a child who has had to refrain from most of their daily activities.

He is a very active kid. He is an exceptional rugby league player, very sporty, and has since put all his activities on hold due to his lack of contact sports or activities.

He understands why, however, the journey has felt long these past few weeks. He has ongoing monthly testing to check his platelet levels, and since he has had no active bleeding, he is not receiving any treatment. His levels have gone up and down, which we were told can happen for a while.

On diagnosis, his platelet levels were 9,000, then dropped and plateaued to 4,000 during his hospital admission. The following few days, they went up to 20,000, which was great to hear, and unfortunately, in this last monthly test, they had decreased again to 13,000. We are hopeful that the disease will fizzle out in time.

We know how scary it is for not just the child but the family to go through because it really does affect everyone at the end of the day. Life has changed a little with his diagnosis, but we are just taking each day as it comes.

We hope that our story can help ease the anxiety with families because we know exactly how it feels, and everyone is doing the best that they can.

Message from the family:

Thank you so very much from our family to yours on the amazing donations Connor has received for his fundraising. Our community really is remarkable in so many ways. Everyone’s generosity means so much to us, and hopefully, this helps towards finding a cure and spread awareness.
Thank you ❤️
The Wilson Family x

During ITP Awareness Week, Connor took on the challenge of helping to raise awareness and fundraising with a GoFundMe campaign. With the help of his family and community, Connor helped raise over $5,000, which will go back into helping people living with Immune Thrombocytopenia.

Written by Connor’s mum, Kim.