Real Life

A rare disease traps Mostyn Baigent

A rare disease has trapped this toddler in his own body.

It was just before Christmas last year when the world turned upside down for Paula and Aaron Baigent and their young family.

Their two-year-old son Mostyn had begun to fall asleep at unusual times, and was showing signs of manic behaviour – repeating words over and over again. Then, on Boxing Day, he had a two-hour seizure.

“It was terrifying,” Paula remembers.

“We didn’t know what was going on.”

They rushed him to Whangarei Hospital, where doctors sent them on to Starship Children’s Health in Auckland. A few days later, Mostyn was diagnosed with anti-NMDA receptor encephalitis.The condition means that instead of producing antibodies that attack a virus, they turned on his brain, trying to kill it. The disorder is so rare, it was only discovered in 2007, with many sufferers misdiagnosed with psychiatric problems.

In a matter of weeks, Mostyn changed from a boisterous little boy to a seriously ill patient, who still can’t eat or hold up his head without help.

Dad Aaron and mum Paula cradle Mostyn.
Dad Aaron and mum Paula cradle Mostyn.

He doesn’t respond to sounds and only shows flickers of recognition when his parents hold him, or Paula showers his forehead with “mummy kisses”. His heart has stopped beating several times. Aaron says it’s hard to cuddle Mostyn, not knowing whether his son even knows he’s there.

“Sometimes, you look into his eyes and it’s like he’s almost normal, but other times he’s not there at all.”

Up to 80% of people with Mostyn’s condition make a full, or nearly full, recovery.

But it’s impossible to know how long it will take, if at all. Paula says they’ve struggled over whether to grieve for their boy because they don’t know how much of him they’ve lost.

Mostyn used to be a giggling toddler, who could make the whole family get up and dance, but his rare condition now means he rarely responds to his loving family.
Mostyn used to be a giggling toddler, who could make the whole family get up and dance, but his rare condition now means he rarely responds to his loving family.

While they’ve managed a bedside vigil at Starship for the past six months, with a series of shifts between them, Paula and Aaron have also been trying to keep home life as normal as possible for their other three sons – Javahn (13), Deyan (10) and one-year-old Taipari, who is still being breastfed.The older boys have really struggled seeing Mostyn in a hospital bed.

“Our 10-year-old came in the other day and said, ‘I really miss Mossy, Mum,’” Paula says.

While he doesn’t respond to noises, Aaron and Paula say Mostyn seems to really like having people around.

“One time, he hadn’t slept for three or four days,” Paula remembers.

“His 13-year-old brother came in and lay down with him, and he just went to sleep. The other day, all the kids were here and there was lots of noise. He was sitting on Aaron’s lap and seemed relaxed.”

But he’s still very vulnerable to infection. Part of his treatment has meant suppressing his antibody-producing red blood cells, and his white blood cells may be next. That leaves him with next to no immune system.

Paula, who works two days a week as a nurse, was banned from seeing him for 10 days when she had a heavy cold, and Aaron, a teacher, dons a face mask and gown to hold him after he’s been in the classroom.

Mostyn has been back at Whangarei Hospital for a couple of weeks, and Paula and Aaron have been told they can take him home any day now, as he’s through the most dangerous part of the illness.

“We thought we’d be here much longer,” Paula says.

“It’s been a bit of a surprise.”

She has been worried about taking him to a cold, damp house in the middle of winter, but friends from her coffee group have rallied to raise funds for the installation of insulation and heat pumps. Meanwhile, the children at Whangarei Intermediate, where Aaron teaches, held a garage sale and raised more than $1000.And Aaron says they’ve had to take the assistance on offer.

At first, they didn’t want to – partly because they didn’t realise how long they would be in hospital. But, as the months have dragged on, they had no choice but to say yes – to everything from babysitting to lawn mowing.

“It’s not very Kiwi to accept help, but we’re getting better at it now. It’s just amazing what people do for you.”

It could be another two or three years before things really change for Mostyn, and Paula says it will be better for everyone when she can permanently take care of him at home.

“I don’t think it’s ever going to go back to how it was before. But it’ll be our new normal.”

Aaron says their ordeal means he will always be a little bit more worried about his kids.

“Now we’ve had a sick child, every time the boys get a sniffle, we wonder, ‘Is this it again?’”

Right now, the family is focusing their hope on the day that their sweet, giggling toddler returns.

“We have glimpses... but it’s like he’s trapped inside,” Paula says.

“He wants to do and say things, but the condition won’t let him.”

You can help Mostyn by donating at track his progress on Facebook at Mostyn’s Journey.

Susan Edmunds

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