Despite this, Malachi made a huge effort to join the conversation and laughed with us while we were talking.
His motto is 'if you fall down seven times – get up eight times'.
Malachi's first hospital admission was at six weeks old, he had his first major brain surgery at 4. Julie has lost count of how many there have been since then.
"I have been genetically tested and found I have a rare mutation of two genes," Malachi writes. "I am the third person in the world to have it and it strikes its hardest during puberty. It is so rare it hasn't been named yet and its main character is the muscles degenerate. There is no cure at this stage."
He also has Chiari Malformation - structural defects in the base of the skull and cerebellum, intracranial pressure, migraines, scoliosis, epilepsy, asthma and some vertebrae are fused, which pinch nerves. 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.
"I have scoliosis which is my spine twisting. I have a deviated palate and malformations in my mouth and need braces not just to straighten my teeth, but to help twist my jaw to where it should be and correct my palate," Malachi writes.
Malachi admits he lives in constant pain that is kept somewhat at bay with morphine.
But health issues aside, Malachi says he is a typical boy who loves planes and aviation and adores our country's Defence Force, the RNZAF and the navy.
"I adore my family and my mum is the biggest hero in my life."
Reading the post made Julie cry; tears of sadness, of happiness and of pride.
"It breaks my heart knowing there are so many things out there that would make his life easier that I just simply can't afford. He is such an awesome kid and, when he is well, loves to hang out with his brothers and kick a ball."
Unfortunately, the good times come with a hefty price - days of pain.
Every day Julie takes Malachi through three, 60-minute physiotherapy sessions to keep him mobile and to relieve pressure on his joints. He cries the entire time because of the pain.
"The relief he gets in those three hours can be gained after 15 minutes in a spa pool. We were fortunate in that we have had access to a spa pool through friends but they have since shifted and it is not available any longer. We go to the town pools and use the spa, and have access to the hydrotherapy pool when we're in hospital, but to have one in the backyard would be a dream come true. "
She is also kicking herself as, after Malachi's bucket list became known, a spa company messaged and said they would love to help.
"I started reading their Facebook message and then, instead of accepting I accidentally declined the message and it disappeared. I was upset for days but there was nothing I could do."
Julie sets her alarm at night and gets up every three hours to turn her son.
"I am trying to get an electronic airbed at home that constantly changes the pressure in little chambers so I can sleep through the night without mum having to get up and I won't get bed sores," Malachi writes.
According to Julie, the most pressing need is a truck to replace the family's ageing van.
"We really need to change our van to a truck that I can have a swivel seat in, fit my gear, have racks and one day, a hoist to take the lifting off my mum. Our car is slowly dying and mum has to walk a lot of the time to save the car for emergencies for me."
Julie is also saving in an attempt to get the family's belongings from Invercargill to Whakatāne.
"We moved to Invercargill last year to have the support of family, pretty much maxing out all the cards to get there, but the cold made everything so much worse for Malachi we had to return to Whakatāne. Unfortunately, I couldn't afford to get our household of furniture back."
In his post, Malachi said he was asked by friends and pastors to share his story to see if people would be willing to help with either encouragement, finance or prayers.
"If you can encourage us then I will love you forever for that. If you can help us financially that would be amazing. And if you are Christian and can pray then please do that, pray for my pain, our finances, for strength for my mum and me and my brothers who make so many sacrifices for me. Living with me can be really tough."
He also instructs readers to not be sad.
To read Malachi's post, go to https://www.facebook.com/search/top/?q=forthe%20loveof%20buttons
