Rotorua's Heath Sutherland is just 16 months old and getting weaker by the day.
At night he often sleeps upright, resting on his mother, because if he lies down he is prone to choking on phlegm, one of the constants that come with spinal muscular atrophy (SMA).
And now, his family and friends are hoping the community can help improve his wellbeing - and tick a few items off a bucket list for the toddler.
SMA is the result of a deficiency of a protein called SMN and affects a child's muscular development. The earlier the symptoms are noticed, the more severe the type, with Type 1 the worst.
Heath has Type 1 SMA. Type 1 babies are generally unable to sit unaided and they do not walk.
"About 68 per cent of children with SMA type 1 die before their second birthday and 82 per cent die before their fourth, but survival is improving with improvements in respiratory and nutritional care.
His mother Anna Sutherland said Heath was only 4 weeks old when they knew something was wrong.
"Heath is the youngest of three, my husband Jonno and I also have a 4-year-old and a 7-year-old.
"There were things we knew babies do, like resisting with their legs at nappy time and at bath time, Heath didn't do that.
"He was constipated for eight months and would not bear weight on his legs, they were floppy."
Mrs Sutherland said she and her husband had to fight to get someone to listen to their concerns.
"We changed GPs, in fact we went through an entire clinic, before we found someone who took us seriously. One doctor told me I wasn't doing enough for Heath."
Tests were eventually carried out the day before Heath turned 1.
"We were told our son had SMA and to go home and Google what that meant," Mrs Sutherland said.
"That night we had family for dinner. I saw Jonno on the computer and then I saw him crying but he told me to enjoy dinner and worry about it afterward.
"When I googled SMA I was distraught."
Since then the Sutherlands have learned as much as they can about the condition.
"I believe there are about 75 children in New Zealand with SMA and I also know, from asking Pharmac repeatedly, the only FDA-approved treatment Spinraza is not available in New Zealand.
"It is currently available at two trial sites in Australia, meaning it is free, but if we wanted Heath to have Spinraza, our only option right now would be to take him to America and pay $750,000 for the first year of treatment.
"This has been a sh*t fight from the start and, as soon as I have Heath a little more stabilised, I intend to make a huge scene .... in an effort get treatment funded.
"Treatment involves four or five lumbar punctures within a month and then at four-month intervals for the rest of the patient's life. I also hope to raise awareness of SMA.
"Right now I am on a waiting list for a wheelchair for Heath and I've been told by a person from Ministry of Health Disability Support Services that I probably won't get one before Christmas."
Mrs Sutherland said Heath won't eat or drink and often chokes on phlegm. Long car rides are not do-able as Heath struggles to support himself on the drive.
"He's just going to get weaker and weaker until he is reliant on a ventilator and a feeding tube.
"We hope he learns to talk, there is nothing wrong with his mind - he's just trapped in his body."
She described Heath as a social baby but the threat of bugs means he cannot go to kindy.
His condition has also affected the family. Heath cannot move is his bed (when he is well enough to sleep lying down), so the Sutherlands must move him every 30 minutes to two hours, rolling him and doing percussions to try and keep his airways clear.
Mrs Sutherland has had to leave her employment to care for him so the family are down to one income and their eldest didn't want to go on a school trip in case Heath wasn't there when he got home.
"But Heath is full of drive. He loves his dog, he loves going out on the farm and he giggles for hours watching his brothers."
Mrs Sutherland's friend Jess Nicholas has started a Givealittle page to help the family.
Money raised will go toward anything not funded but that would make a difference in Heath's wellbeing, travel costs and to help with an annual bucket list the family have compiled.
Mrs Sutherland said her son loved speed so they hoped to take him to Skyline when the weather improved.
Find out how you can support Heath here.