Tell us about Cooper
Cooper is three years old, loves Spider-Man, kicking the footy, Paw Patrol and family time. He is extremely easy going, takes everything in his stride and goes with the flow. Very cheeky, affectionate and sweet!
How and when was he diagnosed with IBD?
He was diagnosed about six months ago after having what we would consider abnormal bowel habits his entire life. It got much worse about 12 months ago and he started passing blood in his stools. It took a lot of insisting on my behalf to get him diagnosed. Doctors kept telling me that he was “too young for IBD”.
How did he react?
He took it all in his stride. We are very lucky that, due to his easy-going personality, he just seemed to accept that he needs to now take medication every day to help his tummy feel better. The biggest adjustment has been trying to explain to him why he can’t eat straight away in the mornings due to his medication. He has had to have a lot of his immunisations re-done and some extras, which has been hard for him but overall, he has handled it really well.
How did you react?
Obviously it was sad to receive the official diagnosis of very early onset (VEO) IBD but we had known deep down that something wasn’t right for a long time. So finally getting an answer was equally a relief because now we knew exactly what we were working with.
How has it affected your lives, more generally?
We are still in the early days since his diagnosis, so not a whole lot has changed yet. We recently moved to rural Victoria and so have been making pretty regular journeys to Melbourne to see his specialists at the Royal Children’s Hospital. Ther’s a lot of juggling shifts and so on to accommodate this but we have tried really hard to still let him be a kid and have fun amongst all of this. Not knowing what lies ahead is probably the hardest part.
What advice might you have for other families going through this?
Just to be your kid’s advocate in all of this. Nobody knows a child better than their parents, and just because something is considered “rare” does not mean it is impossible.
You raised some funds for us this year.
My husband ran his very first marathon this year and he had to pick a charity to raise funds for. Once Cooper was diagnosed, we noticed there wasn’t much information/support/awareness about VEO-IBD so we wanted to contribute to an organisation that we found helpful in navigating his diagnosis early on.