Neihana Renata is 6 and still can't walk or talk.
But at last, his family's decision to speak out about his horrifying choking incident, while eating a piece of apple, at his Rotorua daycare that left him severely brain-damaged has resulted in something good.
The Ministry of Education has this week announced changes to early childhood centres' licencing regulations which means what happened to Neihana shouldn't happen again.
The changes come into force on January 25 and make current guidelines, put in place as a result of Neihana's incident, compulsory.
Food provided by early childhood centres needs to be appropriate for children and kids must be seated while eating. Services that do not provide food must promote the guidelines to parents.
From April 8, there must also be one first-aid trained adult for every 25 children, as opposed to one to 50 children currently.
On May 31, 2016, then 22-month-old Neihana, a twin to his sister Aotea, choked on a piece of raw apple given to him by his Rotorua daycare, Little Lights Kindy. He was starved of oxygen for 30 minutes and now can't walk or talk.
His parents Marama and Wi Renata have spent hundreds of hours since fighting for change.
In April last year, the Ministry of Education announced it would review the criteria of serving and preparing food at all early childhood centres throughout New Zealand and banned certain high-risk choking foods. It gave guidelines on how others should be served.
This week's announcement takes things further and makes those guidelines mandatory, which is a u-turn for the Ministry of Education as it had always said it would not change its policy despite the family's pleas.
Ministry of Education deputy secretary of sector enablement and support, Katrina Casey, said in a statement the amendments, for centre-based services, kōhanga reo and home-based services, were designed to keep young children safe by minimising the risk of choking.
"Prior to this change, early learning services were encouraged to follow the Ministry of Health guidance on provision of food. Now it will be compulsory."
The Rotorua Daily Post has asked the ministry why it didn't make the change earlier. In response, Casey said it intended to make amendments in early 2020 however, the timeline was deferred as a result of the pandemic.
"We've always had guidelines for keeping children safe while eating and expected that most early learning services followed them. However, after meeting with the Renata family, we decided to remove all doubt and make them mandatory."
The ministry's statement said the sector had changed significantly since the current regulations took effect in 2008.
"There are many more licensed services, with a lot more of our tamariki participating in early learning, and at a younger age and for longer hours."
Marama Renata told the Rotorua Daily Post they were "absolutely thrilled with the news".
However, she said it could have been easier if WorkSafe worked through Neihana's case thoroughly to start with and had advocated for change at the time.
"That would have saved us countless hours of work that we didn't need on top of caring for Neihana, as well as having to expose our lives through the media to get any sort of action. Through the media we got the attention of the heads of organisations and this is how we had our case heard properly and why change has come about."
In response, a WorkSafe spokesman said its investigation into the incident was thorough and could not establish grounds for any enforcement against the business.
"However, we passed our findings to the ministries of health and education for them to consider whether further information or guidance about food safety and the risk of choking at ECE centres should be developed. Any questions about the length of time it took to produce that material should be directed to those ministries."
Meanwhile, Marama Renata and her husband Wi have since had a third child, Teia, 9 months.
"Aotea was really keen to have a little sister and I wanted her to have a sibling she could talk and play with."
She said the incident with Neihana didn't put her off having more children but she now kept her children closer to her.
"I'm not so trusting that they will be safe. I will be reluctant for the baby to go anywhere without me until she's much older."
When asked if she still felt sad or if she'd learned to accept what had happened to Neihana, she said life was so busy she didn't have much time to feel sad.
"Sometimes I reflect on how difficult life can be for him, and when he misses out on moving and playing - that does make me sad."