But the Young family’s world was turned upside down when Hugo was diagnosed with hypotonic choreo athetoid cerebral palsy. Shortly after birth, issues were arising.

“He struggled to feed because he had no sucking reflex, so we were taking him to speech therapy from the start to sort that out, as well as a super sensitive gag reflex and sleeping problems,” Rachael said.

At three months old, Rachael took Hugo to a sleep clinic in desperation.

“The people at the clinic said he was still so floppy and should’ve been able to hold his head up more by then so we took him to the doctor for testing. At six-months-old, Hugo had an appointment with a paediatric neurologist and from the moment we walked in, he said Hugo had cerebral palsy,” she said.

After an MRI confirmed Hugo’s condition, it was to be a long road ahead for the Young family with therapy appointments. This type of cerebral palsy means Hugo has quite low muscle tone and poor trunk control and fine-motor skills. Hugo was also diagnosed with epilepsy at 12 months old. 

“He expends a lot of energy daily just trying to hold himself upright, so walking in his frame takes a lot of energy. But he can currently manage 20m with some help,” she said.

The family has begun crowdfunding to purchase a special supportive wheelchair that will help Hugo in everyday life and an iPad to help him communicate. The chair should last Hugo until age eight. The family are registered with NDIS but are yet to receive any support.

“This chair will support him so that he feels comfortable as it will help hold him upright. He will be able to be more mobile and independent as currently his mode of transportation is someone carrying him. The bigger and heavier he gets, the more difficult this is becoming. This wheelchair will help him get around at preschool, the community and within the home with more ease,” Rachael said.

By Thursday, the family had raised more than $4500 towards their $10,000 goal. The NVI published a story online and overnight donations flooded in, resulting in the family reaching their target. Today the total is sitting at more than $12,000.

“Since we started this four weeks ago, I’ve been touched by the generosity of people. Every little bit counts and everyone has been incredibly generous,” Rachael said.

To donate, visit mycause.com.au/hugoswheels