This is a snippet of Malachi's journey through life dealing with multiple medical conditions. Supplied by Julie Agnew
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 StarshipHospitals.
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.
Malachi Agnew has a bucket list and top of it is meeting Jacinda Ardern. Photo / Supplied
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."
Malachi Agnew has a bucket list and top of it is meeting Jacinda Ardern. Photo / Supplied
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 Agnew, pictured with mum Julie Agnew, has a bucket list and top of it is meeting Jacinda Ardern. Photo. / Supplied
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
