Jacob's Story

06 Feb 2020

When four-year-old Jacob came down with a fever and complained of an aching body, his mum and dad put it down to the common cold, as any parent would. It wasn’t until he woke up one morning unable to move his left arm that they realised something was seriously wrong.

In the days following, Jacob lost strength throughout his entire body and was unable to sit, stand or even breathe properly. He was rushed to The Children’s Hospital at Westmead and was diagnosed with a one-in-a-million condition known as Acute Flaccid Myelitis (AFM).

Acute Flaccid Myelitis is a disease that affects the part of the spinal cord that carries messages to the brain. While extremely rare, the disease can be caused by something as simple as a common virus and the damage caused is often irreversible.

For Jacob, the disease attacked his spine, causing a severe spinal injury and completely paralysing his left arm and diaphragm.

Jacob’s parents, Sheryn and Craig, were in a state of disbelief when their son’s rare condition was revealed.

“As a parent, hearing that your child has a rare and irreversible medical condition that only affects one in a million children is hard to put into words. We felt alone, scared, confused; it was like a nightmare we couldn’t wake up from.” Sheryn said.

Jacob spent three months in the Paediatric Intensive Care Unit (PICU) at The Children’s Hospital at Westmead, where he learnt to breathe, sit, stand, walk and talk again. He now requires ongoing intensive rehabilitation, which will continue for the rest of his life.

It’s a whole new world for Jacob’s family but they are remaining positive and doing their best to adjust and provide a fulfilling life for Jacob.

“Living with a child with a disability has opened our eyes to so many different things. Jacob has lost his independence and freedom and is now required to be monitored by a person with special training at all times.” Sheryn said.

Although Jacob has been through the unimaginable, he has made a remarkable recovery that defied all odds and continues to be a happy four-year-old who lets nothing hold him back.

“I can’t put into words how grateful I am for every single person who has been a part of Jacob’s journey at the Hospital. In what was the hardest part of our lives and what could have easily been a negative experience for us all, the team at Westmead have made so many positive memories for Jacob and our family.

To the staff in PICU, you were Jacob’s home for two months and he still looks back on those days with love and happy memories. You all made an effort to bring fun into every day and went out of your way to normalise his situation. We will forever cherish you all and be forever in your debt for saving our little man’s life.” Sheryn said.

Sheryn’s biggest hope is that one day Jacob can have an exoskeleton arm built. She dreams of him being able to wrap both arms around her and give her a hug like he did before his diagnosis, which is what makes the Bandaged Bear Appeal so important.

This year, Jacob is an ambassador for the Bandaged Bear Appeal, which raises vital funds to enable the Hospital to purchase the very latest medical equipment, conduct life-changing research and support essential services for sick kids and their families.

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