Parents’ long fight for Jaxon’s life, funding
Jaxon Moke’s mum and dad have been fighting for his life since the day he was born.
The Makikihi boy, who turned 5 on Saturday, was born with a ventricular septal defect, or a hole in the heart, and had open heart surgery at nine weeks. He was diagnosed with autism as a 3-year-old, and also has seizures and asthma.
Due to his autism, Jaxon doesn’t feel pain or hunger, or react to pain or injury, in the same way other children do. His parents, Tama Moke and Rachel Dunstan, have spent countless painstaking hours teaching him how to communicate in three- worded sentences.
With Jaxon’s first day at Makikihi School coming up on April 30, Moke and Dunstan were dismayed to learn he would only receive funding for 12.5 hours of teacher aide and specialist help, meaning Dunstan would have to give up her hairdressing job to help out.
But after Stuff enquiries, the Ministry of Education last week agreed to an extra four hours of funding.
‘‘We are absolutely stoked with the 16 hours,’’ Dunstan said. ‘‘It’s been a really stressful process for us and I just wonder how many other families have to go through this process?
‘‘We count our blessings every day, but life is really hard, and we are suffering. I don’t know how much more we can handle.’’
The couple are encouraging other parents of special needs children to keep fighting to get them the best education.
The Ministry of Education received nearly 10,000 applications for Ongoing Resourcing Scheme (ORS) funding between July 2011 and September 2017, and one-third of those applications - or 3057 - were declined.
Ministry of Education deputy secretary sector enablement and support Katrina Casey said parents seeking more support for their children are welcome to contact their child’s school or teacher.
‘‘Their local ministry office can also provide advice and guidance,’’ Casey said.
Extra help could come in the form of a speech-language therapist, an occupational therapist, a physiotherapist, a psychologist, an advisor on deaf children or a special education advisor.
New Zealand Education Institute president Lynda Stuart said there was a strong need for special education needs co-ordinators to work with all schools to ensure children received as much support as they need.
She said the ministry provides support to about 9100 children and young people throughout the country, with funding of about $191 million per year.
On Saturday, the family celebrated Jaxon’s birthday with a party. ‘‘Jaxon’s favourite things in the whole world are balloons and bubbles, so his Dad and I filled the house with different shapes and colour balloons before he woke up this morning,’’ Dunstan said. ‘‘He’s absolutely loving it.’’