The parents of a toddler with cystic fibrosis want paid care to be extended to help families like theirs to help cope with the financial burden the condition brings.
Two-and-a-half-year-old Tailen O'Connor was diagnosed with the life-limiting genetic condition at just three weeks old.
Since then the Waikato youngster has been hospitalised for complications nine times. His latest stay, to fight infection including bacterial pneumonia, has lasted a month so far and included a trip to Starship hospital.
Parents Jaison O'Connor and Shannon Turnbull say the condition has meant they need to provide round the clock care for their little boy and they gave up work to do so.
"We have had a pretty rough time as far as the CF goes," Turnbull said.
Cystic fibrosis is a progressive lung disease passed to children through a one in four chance if both parents are carriers.
The couple each have three other children to previous relationships and were unaware they were carriers until Tailen was diagnosed.
About 500 children and adults live with CF in New Zealand and one in 25 people carry the faulty gene that affects mucus and sweat glands, causing mucus to be thick and sticky.
In Tailen's case, as with many other sufferers, he is also pancreatic insufficient which means he needs insulin medication with every meal.
The little boy from Ngāhinapouri, outside Hamilton, has been on a nebuliser since he was six months old which provides mucus thinning medication.
Family carers for ill or disabled welcome Govt changes to funding
Up to $25.50 per hr to care for ill or disabled loved ones
Doctors also needed to insert a peripherally inserted central catheter [picc] line that carries medication through the blood to the heart for intravenous antibiotics to combat infection.
Turnbull, 32, says even when her son was not sick he required hours of physiotherapy, nebulisers and complex medicating every day.
Turnbull was forced to give up her business as a wedding photographer and florist, which left O'Connor - her apprentice photographer - also out of work.
"We can't commit to weddings which is a serious dent to our income," O'Connor said.
"It's hard. You can't even commit to family things."
Turnbull receives supported living, family assistance, disability benefits and an ACC supplement but with O'Connor, 42, out of work awaiting back surgery the family can barely get by each week.
Rent alone is $450.
The couple said they felt as if they were being punished for choosing to care for their son.
"It's a hard road," Turnbull said. "I've had to give up quite a good income to be paid as a beneficiary because that's what I'm cast as. We are equal to caring at a complex level."
They couldn't risk putting Tailen into a daycare centre and only qualified for very limited respite help.
"It takes the both of us [to care for Tailen when he's sick] and we are completely run off our feet," O'Connor said.
"It's not just an eight hour day," Turnbull said.
They were however grateful for Tailen's care at Waikato Hospital which they praised highly.
The couple hoped that by sharing Tailen's story other affected families would support their call for paid carer assistance.
Cystic Fibrosis New Zealand chief executive Jane Bollard said it had been active in the past with Carers Alliance trying to get family carers recognised.
Bollard said to that end CFNZ would be responding to the Ministry of Social Development consultation document on the NZ Carers' Strategy Action Plan.
She said it could be very difficult for parents to look after a child with CF particularly if their child was unwell and had frequent stays in hospital.
"CF is a time-consuming and burdensome condition and it is common for one parent to be unable to sustain fulltime employment due to time needed for treatment, hospital clinics and admissions."
CFNZ paid $190,000 last financial year directly to people with cystic fibrosis and their families to assist with the cost of CF, while children with CF receive the child disability allowance.
In July the Government announced it would pay partners and spouses who look after disabled family members up to $25.50 an hour.
The Government will also extend Funded Family Care to those caring for disabled children under 18 and the new law would come into effect next year.
Although Funded Family Care does not cover children with cystic fibrosis, Associate Minister of Health Jenny Salesa encouraged the parents to visit their GP or contact the local Needs Assessment and Service Coordination unit to discuss financial support options.
About cystic fibrosis
• CF affects lungs and digestion. It is the most common life-threatening genetic disorder affecting Kiwis;
• People with CF secrete thick, sticky mucus. The mucus in their lungs traps bacteria which can result in chronic infections;
• Those with CF struggle with reduced lung function, progressive lung damage and possible respiratory failure;
• Treatment includes physiotherapy to dislodge the mucus, nebuliser, medications and supplements;
• As the disorder progresses, a lung transplant can extend and improve quality of life, however, it is a last resort and many become too weak while waiting.