tNewsr

Celebrating Patrick

28 February 2020

Meet Patrick, a little boy with a rare disease making a remarkable recovery...

When three-year-old Patrick had the sniffles, his parents Georgia and Adam thought he may have picked something up from day-care. Their happy and cheeky little boy was quieter than usual, so he went to sleep earlier that night to try and shake it off.

But when little Pat woke up the next day, his right arm was paralysed. His parents rushed him to their local hospital, where the Emergency doctor suspected it was serious and recommended a transfer to Sydney Children’s Hospital, Randwick.

Upon arrival at the Emergency Department, Pat was seen by Neurology specialist, Dr Ian Andrews and was diagnosed with Acute Flaccid Myelitis (AFM), due to enterovirus infection.  This is a rare disease that, like polio in days gone by, affects the parts of the spinal cord that controls movement.  There is no vaccine for this disease and treatment is limited. 

Despite starting the available treatment immediately, Pat deteriorated quickly. In only 24 hours, he lost movement in both arms, upper body and had weakness in his legs, he couldn’t sit up and was struggling to breathe as his left diaphragm collapsed. He was put on high-flow nasal cannula (HFNC) therapy in ICU to help him breathe.

His parents were in shock. Georgia said, “How can our happy, cheeky little boy suddenly become so ill? It all happened so fast and not knowing what was happening before his diagnosis was the hardest.”   

After a week in ICU and 24-hour care, he was well enough to be transferred to the ward. But he still had a long road ahead of him. He couldn’t walk or hold his head up. He had to learn how to do all the basics again.

To help with his recovery, Rehab 2 Kids stepped in. Pat needed intense occupational therapy and physiotherapy, starting three to four times a day, and scaling back as he grew stronger over seven weeks.

Luckily Pat loved it. “We had so many questions and there were so many unknowns. Will Pat walk again? Will he ever be able to ride his bike or jump on the trampoline? We were so scared, but his team were absolutely amazing. They used play-based therapy to make sure all his activities were fun and enjoyable.  He was never bored and even looked forward to it. Knowing that really helped us in a time of uncertainty. The Rehab 2 Kids team helped Pat to walk again and regain partial use of his arms.”

Georgia and Adam were determined to learn as much as possible about their son’s condition and nerve transfer surgery, a treatment typically done on Brachial Plexus nerve injury patients with positive results in the US. The Hospital helped arrange Pat’s transfer to a specialist at The Children’s Hospital at Westmead who performs this type of surgery. After two operations and months of waiting to see flickers of movement, Pat regained further use of his arms – which was fantastic.

He’s now back jumping on the trampoline and has recently started Kindergarten, where he’s making a heap of new friends! He continues to come to Sydney Children’s Hospital, Randwick for yearly check-ups.

Georgia said, “He’s a real go getter, very determined – was then and still is now. For him, and for us, it’s all about things he can do not what he can’t do. We’re so proud of how far he has come and so grateful to the wonderful Hospital staff for their support and encouragement.”

Thanks to your support, kids like Patrick can receive the very best care so they can get back to being kids again. 

 #RareDiseasesDay