CORNWALL, Ontario – Mya Jackson is just like any other Cornwall five-year-old – with one major difference.
She bounces around the living room, moving from Ipad to television with lightning-like speed and soaking up all the fun of an occasion like Halloween.
But unlike the balance of her five-year-old friends, Mya has a date with a brain surgeon in a few weeks to remove a massive brain tumour that has attached itself to her frontal lobe.
Her condition is part of a rare disease known as NF2 – an inherited ailment that leads to the formation of tumours in the brain and parts of the nervous system.
She has other tumours near her ear, and on her spine, but the one attacking her brain is of special significance.
“In the space of three months it grew 50 per cent,” said her mother Tanya Lamarche. “It has to come out between now and Christmas.”
Little Mya, due to her age and because Lamarche wants to spare her daughter the worry by explaining the specifics of the procedure, doesn’t fully comprehend what’s in store for her.
“I just haven’t had the heart to tell her,” said Lamarche. “She knows she has a bo-bo in her head.”
The surgery comes with some significant pitfalls and risks. Mya will lose her sense of smell and taste and her vision and hearing could be impacted as well.
But perhaps most compelling is that the surgery could result in some personality changes too.
“That was the hardest part,” said Lamarche. “You don’t know what you’re going to get afterwards.”
The tumours are not cancerous, but their growth creates problems, especially in confined places like the human skull. The growth of Mya’s tumour is leading to fluid buildup and other complications.
Lamarche is waiting for an upcoming doctor’s appointment to determine when Mya’s surgery will take place and what kind of procedure will be done. It’s most likely doctors will open her skull to remove the tumour – but there’s also a possibility that they could go in through her nose.
Lamarche is understandably stressed.
“Really you don’t expect it to be you,” she said. “You think it’s going to be in another person’s family.”
She added the rare occurrences of NF2 have led to quizzical looks from the small number of people who know Mya is sick, and even some doctors have been confused by her condition.
“I don’t even think the people who live around here,” she said, gesturing to the neighbourhood from her Briarhill home, “know that Mya has this.
“No one knows what it is.”
Lamarche has taken a leave of absence from work, in part due to stress but also to prepare for the looming surgery.
A fundraiser is being planned for the family, with details to come soon.
In the meantime, Lamarche and Mya are preparing as best they can.
“She is just so happy and loves life,” said Lamarche.
A Facebook page for Mya has been created and can be found here. Lamarche can also be reached at firstname.lastname@example.org.