Fundraiser launched for Whanganui three-year-old fighting to save eyesight

Tyler Webby undergoes chemotherapy once a week in Whanganui. Photo / Supplied

A fundraiser is kicking off this week to raise money for Tyler Webby, a Whanganui three-year-old battling a brain tumour.

Mother Larissa Wroe-Doyle said her son had a genetic condition called neurofibromatosis, which caused tumours to form throughout his nervous system.

"There are multiple tumours in his brain but the main one is on his optic chiasm, which is at the back of the eyes.

"They were discovered after he had a seizure when he was two."

Following the seizure, MRIs (magnetic resonance imaging) were conducted in Palmerston North and Starship Children's Hospital.

In April 2021 it was confirmed that Tyler had to receive chemotherapy.

Due to where it is located, operating on the tumour could cause permanent blindness.

Ladybug Foundation is a New Zealand charity that focuses on supporting families dealing with neurofibromatosis.

It was started by Lisa Mullins, whose 15-year-old daughter Mikayla has the disease.

Mikayla is currently undergoing chemotherapy for a tumour on her spine.

"There are three categories - neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2) and schwannomatosis," Lisa Mullins said.

"It's more common than cystic fibrosis, but it doesn't seem to be very well known."

The majority of patients she knew had NF1, and around one in 3000 people were affected by it, Mullins said.

"It is an ongoing thing, from day dot to the day you pass away. There is no chance of it going away."

Mullins said there were no NF specialists in New Zealand at present.

"As Mikayla moves out of paediatrics into the adult medical system, that is where it starts getting very scary.

"She will be with a GP, so it's about finding that ideal person who is willing to take on a patient that doesn't fit the normal realm."

Tyler Webby undergoes chemotherapy once a week in Whanganui. Photo / Supplied

Tyler, who is NF1, undertook chemotherapy sessions every Wednesday at Whanganui Hospital, Wroe-Doyle said.

"He flies up to Starship every three months for routine MRIs to see if the chemotherapy is actually helping.

"This tumour affects his ability to learn and his ability to see.

"As of now, it hasn't changed. It hasn't grown but it hasn't shrunk."

Wroe-Doyle said chemotherapy would continue until the end of 2022, before doctors in Auckland undertook a review.

"If it hasn't helped then it's a case of where we go from there, whether we continue with the treatment to keep Tyler's tumour stable, or if there's something else we want to do."

Right now, Tyler was generally healthy and loved going to kindergarten three days a week, Wroe-Doyle said.

However, the chemotherapy made him more prone to illness.

"Obviously it lowers his immune system, so when the flu comes around he gets it and when a gastro bug goes around he gets it."

According to an eye test two months ago, Tyler's vision had already deteriorated.

"The whole point of this chemotherapy is to shrink the tumour and save his eyesight at a young age, otherwise when he gets older he will go blind."

Mullins said Ladybug Foundation was named after the light brown spots (cafe au lait spots) on Mikayla's skin when she was born, Mullins said.

The spots are a common sign of neurofibromatosis.

"We are here to raise awareness and offer as much support as we can.

"Every patient is different and it can feel like you're always on the edge of your seat, waiting for what comes next."

Wroe-Doyle started a Givealittle page to raise money for "a safe and reliable vehicle" to transport Tyler to his chemotherapy sessions and other medical appointments. The rest of his family is made up of father Scott Webby and younger sisters Holly and Emily.

From June 3 to June 5, Whanganui restaurant Wicked Chicken will donate $2 from every transaction throughout its business hours to Tyler and his family.

The fundraising page can be found at www.givealittle.co.nz/cause/tylers-fight-with-a-brain-tumor

For more information on the Ladybug Foundation, head to www.ladybugfoundation.co.nz