Not many 12-year-olds have a bucket list but for Malachi Agnew it's what keeps him fighting - and top of that list is meeting Prime Minister Jacinda Ardern.
The Whakatane boy has fought numerous medical conditions his whole life and spends much of his time between Tauranga, Waikato and Starship Hospitals.
His first hospital admission was at six weeks old and by 4 he had his first major brain surgery to treat Chiari Malformation - structural defects in the base of the skull and cerebellum, the part of the brain that controls balance.
He also has intracranial pressure, migraines, scoliosis, epilepsy, asthma and some vertebrae was fused which now pinch nerves and he has to be fed through a port in his stomach because his stomach muscles are too weak to digest food and his body does not absorb enough nutrients.
Now his muscles are starting to degenerate and doctors are doing tests to find out what's causing it so they can treat it before it gets to his heart.
Malachi woke up in Starship's high dependency unit recently, looked at all the machines he was hooked to and there were some things in life he did not want to miss out on. That's when he started his bucket list.
He has 74 things on his list but, right now, meeting Ardern is his top priority.
"I feel proud to call her the Prime Minister of New Zealand and I like what she does and how she helps low-income people," he told the Herald. "Because of what she did with the mental health and the low income people and all the decisions she's making, they are really cool ones.
"I would tell her all that and say thank you and shake her hand and thank her for all the things."
Mum Julie Agnew, a single mum to four boys, said he was writing letters and doing all he could to meet Ardern.
"He is busting his gut to meet Jacinda," she said. "He's a little bit of a nerd. He really loves the fact she's helping low-income families. He was really over the moon to hear yesterday that she's helping with mental health. He's really excited about causes like that.
"Of course being in hospital and with a lot of sick kids we do actually come across the mental health thing quite a lot, so it's really quite close to him. And we are a low-income family so he's personally seen how much her decisions have made a difference to our lives."
Also high up on his list are flying to White Island and getting to stand on the volcano, holding a kiwi and catching a trout.
Already ticked off his list was taking on the high-ropes courses at Adrenalin Forest, teaching his little brother to fly a kite and designing a wedding dress for his mum in case she gets married one day and he's not around.
Malachi lives on painkillers and has to have physiotherapy three times a day to keep his muscles and joints moving so the bucket list gave him something else to focus on, Agnew said.
"Once he made the bucket list it gave him something to look forward to," she said.
"Hopefully he'll live to a ripe old age but we've come so close to losing him so many times."
Malachi's aunt has set up a Givealittle page to help the family gather the money to get the equipment he needs like a pressure bed and a hydrotherapy pool but also to help tick off some of his bucket list items.
Malachi's Bucket List
1. Feel what it is like to fly free DONE
2. Trot a horse DONE
3. Canter a horse ORGANISED
4. Stand on a volcano and not die ORGANISED
5. Graduate intermediate
6. Drive a 4 wheeler motorbike DONE
7. Sit among heroes (local RSA)
8. See mum get her private pilot's licence
9. Catch my first trout ORGANISED
10. Fly in a helicopter DONE
11. Watch a chicken hatch out of its egg
12. Get my first deer (and see Mum's face) DONE
13. Show Maitlan (older brother) how he's my hero
14. Take Jelani (younger brother) to his first day of kindy DONE
15. Take Myran (younger brother) to his first day of school
16. Meet the Black Falcons DONE
17. Go to Air Tattoo DONE
18. Fly a NZ flag
19. Get a family photo for Mum
20. Work at SPCA for a day
21. Learn to juggle
22. Do Tongariro crossing with Mum
23. Stand under a waterfall ORGANISED
24. Meet a tuatara
25. Cuddle a real kiwi ORGANISED
26. Scream DONE
27. Fly with Dave Brown
28. Show Mum how I see her really
29. See a NICU baby
30. Paraglide
31. Go skiing
32. Watch Myran in his first flight
33. Sit in a Hercules (RNZAF)
34. Swim with sharks at Kelly Tarlton's
35. Go on a first date
36. Kiss the most beautiful girl in the world
37. See Maitlan parachute (witness his dream come true)
38. Meet Jacinda Ardern
39. Meet someone who understands beauty DONE
40. Stand on Whenuapai Air force base and watch parade
41. Do karaoke
42. Do a somersault
43. Do something unexpected for someone
44. Run and dance barefoot in the rain
45. See a sunrise DONE
46. See a sunset
47. Dance with Mum
48. Get a dog that's mine and Mum's so she can cuddle it when I'm in hospital
49. Do overnight tramp with Maitlan
50. Make a difference in someone's day
51. Swim with dolphins
52. Find mother nature
53. Fly kites with Myran and Jelani DONE
54. Plant a tree of life
55. See Alastair on parade
56. Write letters to Mum and my brothers
57. Make a wedding dress for Mum DONE
58. Put a time capsule down
59. Become a nurse
60. Go to Alice Springs and see flying doctors
61. Hunt my first pig
62. Go through a dam and see how it works DONE
63. See a bee hive and collect the honey ORGANISED
64. Go in a speedboat
65. Watch something with a big machine
66. Drive a car ... fast on a race track
67. Do a high ropes course with Maitlan DONE
68. Feed stingrays
69. Sky swing with Maitlan
70. Spend an entire day at Motion Entertainment in Rotorua with my brothers and Mum
71. Gliding
72. Indoor skydive
73. Zorb
74. 3D figures of my family
Firefighters responded shortly before 9am on Friday.