Little boy 1 of 100 worldwide affected by this disease
A LISMORE family's lives have been turned upside down in the space of two months.
The parents of four children under 10 received news in November their second youngest, four-year-old son Nicholas, would require around the clock care after his rare degenerative muscular condition worsened.
Mother, Richelle Harding said he was officially diagnosed with spinal muscular atrophy with respiratory distress type 2 (SMARD) in August last year.
The severe neuromuscular condition had only been seen in about 100 people worldwide and for Nicholas, requires life-long support.
Ms Harding had spent five weeks in PICU (Pediatric Intensive Care Unit) in Brisbane with Nicholas, who was transferred from Lismore Base.
One thing after another - the family had been dealing with being separated - and her husband's recent job loss has added "a whole other stress".
Suffering started at birth for Nicholas and his family, after he was born small and underweight.
Before he reached two, Nicholas had experienced physiotherapy, speech therapy and seen a dietician, had visits to pediatricians, pediatric neurologists, geneticists and then received care from a specialist neuromuscular clinic.
Last year he was swimming, attending pre-school and loving spending time with his siblings.
"He is now ventilator dependant, he needs the machine to breath up to 24 hours a day," Ms Harding said.
Nicholas received an electric wheelchair in July, a few weeks before he was admitted to hospital and when he returns home he will be reliant on this chair to leave the house as it is presently being fit to hold his breathing machine.
But the Harding family don't have the means to afford a new vehicle, which will still need to be modified to fit the chair.
A GoFundMe page 'Get Nicholas Wheels' has currently raised $1,080 of a $50,000 goal.
"We are trying to raise money to purchase a vehicle that can be modified to take his power chair.
"The new system that is coming will modify a vehicle so long as it is less than two years old."
Before heading home, ventilators, a home hospital bed, ambulance transfers, equipment funding and air-conditioning for the home must be organised.
They will also need to hire support.
"He needs to be monitored while on the machine, the mask can move which could stop his breathing at night," Ms Harding said.
"It's certainly changed our lives completely in the space of two months."
She said he was otherwise a "typical four-year-old".
"He's such a strong, determined, cheeky, smart and happy little boy and we want to be able to give him every opportunity we can to experience life independently."
In their search for a suitable car, Mrs Harding said Nissan Kia and Toyota in Lismore have offered to help out and give good deals.