Jai 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.

Jai Anstis has “hundreds” of seizures a day that sometimes stop him from breathing. The 7-year-old is scheduled to undergo brain surgery at Starship Hospital this Monday 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 has 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. They now live in Tauranga.

“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 NZME.

“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 per 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.

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 the weekend with a lot of donations from the community.

Bowers-Anstis reported the event was a huge success and raised more than $5000.

On Tuesday, February 13 there is a movie fundraiser showing Priscilla in Te Awamutu’s Regent Theatre, followed by a second movie fundraiser on February 22 at Luxe Cinemas Pāpāmoa.

Tickets for the Te Awamutu movie are $20 and available from Megan Titchener, text or call 0274 553 878. From 6.30pm there will be raffles and silent auctions for donated goods and services and the movie starts at 7pm.

The family has also set up a Givealittle page - search Jai.

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.