Ollie’s Road to Recovery

What is Juvenile Dermatomyositis (JDM)?

This is a extremely Rare autoimmune Disease that effects 2-3 cases per million children each year. This is what Ollie has been diagnosed with.

Leading up to his diagnoses, Ollie was reviewed by his GP for a rash on his face and swollen eyes

and had one presentation to hospital for constipation. After weeks of symptoms and unfortunately nothing improving or answers, it was during a family weekend away Ollie deteriorated very quickly and was unable to mobilise. This is when they realised something wasn’t right.

Ollie had follow up blood tests from his presentation to hospital and this discovered Creatine Kinase (CK) over 1500 (normal is 250 U/L ). He deteriorated rapidly and after many tests, CT’s and a MRI, 2 days later was diagnosed with (JDM) Juvenile Dermatomyositis. The following day he was transferred via lifeflight to the Queensland Children’s Hospital for treatment.

Ollie is a vivacious and caring little four-year-old boy, but unbeknownst to us, has been struggling with a rare auto-immune disease that causes inflammation to the muscles and skin as his immune system fights against his own body

I cant imagine what it must be like for Rennai and Nathan but the worry would be unimaginable when your child has been seeing Doctors for weeks and progressed to a stage of not being able to walk. 

.It has been an emotional rollercoaster watching Ollie being bed bound and getting around in a wheelchair. We are still not sure what the future looks like in terms of Ollie’s recovery and are taking it day by day at the moment and appreciating small things like Ollie being able to climb up into bed on his own. Hoping with his daily steroids, weekly methotrexate injections and working closely with a physio he will be able to run around and play soccer with his older brother soon and hopefully go into remission after a few years of treatment. 

Any bit of help is truly appreciated for the family, as they have and will face more financial pressure, on top of the emotional toll.