Tauranga boy to undergo brain surgery to ease severity of ‘horrific’ seizures

Tauranga boy Jai Anstis is planning to have brain surgery at Starship Hospital in the hope it will ease the severity of his daily seizures.

Tauranga boy Jai Anstis has “hundreds” of seizures a day that sometimes stop him from breathing. The 7-year-old is planning to undergo brain surgery at Starship Hospital in the hope his “horrific” seizures will become less severe. His mother, Jaimie Bowers-Anstis, is organising several fundraising events to financially support the family as they care for Jai during and after his surgery. Megan Wilson reports.

Jaimie Bowers-Anstis’ family have spent a lot of time “living in and out” of Starship Hospital and Ronald McDonald House.

Her son, Jai, was born in Te Awamutu as a happy and healthy baby. But at 9 months old, he contracted the herpes simplex virus.

Instead of getting a cold sore, the virus went into his brain. While at the hospital he also contracted encephalitis — a brain inflammation.

Jai has a severe brain injury, developmental delays, Lennox-Gastaut syndrome and refractory epilepsy — seizures that are not controlled with medications.

Baby Jai at 9 months, after contracting herpes simplex virus.

Bowers-Anstis said she used to work part-time as an early childhood teacher, but quit her job a few years ago to become Jai’s fulltime carer. Her husband, Mike, is a fulltime builder and the couple have two older children — Eden, 15, and Jake, 12.

“Our children haven’t had a normal life for seven years ... the kids have grown up with the shadow of having a really medically fragile brother,” Bowers-Anstis told the Bay of Plenty Times.

“We’ve spent a lot of time living in and out of Starship and Ronald McDonald House.”

Brain surgery in the hope of easing ‘horrific’ seizures

Six years ago, Jai was prescribed cannabidiol — an oil-based medicinal cannabis — which initially helped to reduce the number of seizures.

However, over time, cannabidiol has become “less effective” for Jai’s seizures, Bowers-Anstis said.

Bowers-Anstis told NZME in 2018 that Jai would have up to seven seizures in 24 hours.

Now, he was having “hundreds” of “horrific” seizures a day.

Tauranga boy Jai Anstis is non-verbal and autistic and goes to Tauranga Special School — a school for children with learning and physical disabilities.

Bowers-Anstis said it was hoped brain surgery would ease Jai’s seizures, which sometimes stopped him from breathing. The family are meeting with a surgeon at Starship Hospital in Auckland on February 5 and hoping to get a confirmed date then.

She explained the surgery — a corpus callosotomy — would sever the fibre bands joining the left and right sides of the brain.

“They’ll then work as separate entities. The corpus callosum is our information carrier from the left to the right brain so if big seizures can’t travel the whole brain, then they’re generally less severe.”

She said the brain surgery would not cost anything, but the amount of time her husband, Mike, was having off work to support the family during this time was “quite significant”.

Bowers-Anstis said the surgery would be at Starship Hospital and Jai would be in the ward for about two weeks if it went well. The family would then spend two to three weeks in a rehabilitation facility on Auckland’s North Shore.

Fundraising events

Bowers-Anstis said she was organising several fundraising events to support the family while they lived away from home for Jai’s surgery and rehab recovery in Auckland. Any leftover money would go towards private rehabilitation when they returned to Tauranga.

This included a “rack sale” for second-hand clothes at Mount Maunganui Community Hall on February 3 from 9am to 4pm.

She said she had received “a lot of donations” from the community and everything would be priced between $5 and $25.

On February 13 will be a movie fundraiser showing Priscilla in Te Awamutu, followed by a second movie fundraiser on February 22 at Luxe Cinemas Pāpāmoa.

She said there would also be “two massive raffle baskets” for which several local businesses had donated prizes including yoga passes, sauna passes, perfume, beauty products and vitamins.

Raffle tickets could be purchased from Bohzali in Mount Maunganui from January 29 until February 3, when the raffle would be drawn.

Bowers-Anstis thanked the Mount Maunganui Hall committee for its donation to use the space and the 15 small local businesses who contributed — Mahana Yoga Loft, Bayfair Life Pharmacy, Max and Louie, Oceanbeach Oxygen Therapy, ReDefined WellBeing Hub, Zen Float Spa, Yoga and Oils, Red Kitchen dinners, Elope Design Vault jewellery, Bohzali, The Birdcage, Fling Cocktails, Frankie and Me Beauty, Amy Ashford Hair and Pearl Salon.

The family have also set up a Givealittle page.

Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.