Kiwi boy Freddie Fagan faced with $144,000 surgery cost to save him from going blind

Auckland boy Freddie Fagan, 22 months, has an extremely rare condition which could lead to blindness unless he can undergo an operation in the US. Photo / Supplied

Born with a rare condition devastating his sight, little Freddie’s family are determined to stop him going blind. And while they are humbled by the generosity of strangers giving their little boy hope, their challenge continues to get him the care he needs.

With blonde curls and big blue eyes, Freddie is a happy, resilient little boy, unlike most others his age.

He has never shed a tear and connects with people by touching their faces or stroking their hair.

From the moment he arrived, early and small, his mum, Monica Yeoman knew something was different about her calm, gentle baby.

Freddie Fagan with his mum, Monica Yeoman, and dad, Joe Fagan. The family are fundraising for surgery in the United States to stop Freddie going blind. Photo / Supplied

Unable to feed, he was put on a tube for the first four months of his life. And in the months that followed, Auckland-based Yeoman and Freddie’s dad Joe Fagan noted their little boy wasn’t reaching expected milestones.

“And so, we started doing investigations,” Yeoman tells the Herald.

“Then at nine months old, he finally had an MRI of his brain at Starship. And that gave us this really rare diagnosis.

“The neurologist immediately was like ‘Okay, come into our office. Let’s talk. I know exactly what it is,’” she told Yeoman, despite having only seen it once before in her career.

“The anatomical structure of Freddie’s brain is so different that even though the condition is so rare, it’s so apparent when you see it. It’s not genetic. It’s just completely random,” explains Yeoman who recalls being “completely devastated but empowered” after months of searching, to get a diagnosis for Freddie.

Called Pontine Tegmental Cap Dysplasia (PTCD), there are fewer than 100 known cases in the world and only one other in New Zealand.

Described as a congenital malformation of the brainstem and hindbrain, the non-progressive condition impacts vision, hearing, cognition, speech and mobility. In severe cases, PTCD sufferers aren’t able to sit up without assistance.

Freddie Fagan's mum, Monica Yeoman says: “Because Freddie has so many challenges and it’s unknown whether he will ever talk or walk, we feel his eye sight is all the more important". Photo / Supplied

For Freddie, who has begun to crawl at 22 months, it is unknown whether he will ever be able to walk or talk.

While his hearing isn’t affected and he loves music, his parents are teaching him sign language, for which his sight is crucial but extremely vulnerable.

“Communication is one of Freddie’s biggest struggles and we feel he’d be very, very lost without sight to assist him with that,” says Yeoman.

Because PTCD affects the nerves that run from the brain to the face, Freddie’s eyes don’t operate as they should.

“Freddie doesn’t have any feeling really anywhere in his face,” his mum says.

It means he can’t blink or produce tears and his eyes don’t generate the necessary lubrication to protect them.

After a severe bout of ulcers at Christmas, the decision was made to sew Freddie’s eyes half shut as a temporary measure to mitigate further scarring and vision loss.

Freddie had his eye lids sewn partially shut in an attempt to protect his eyes from further damage. Photo / Supplied

The potential for infection and further damage to Freddie’s eyes impacts his ability to do the little things he loves, says his mum.

“Freddie’s favourite things to do are the things we have to be so careful about. He loves going on the bike with his dad, playing in his paddling pool and going on family bush-walks.”

Freddie with his dad, Joe Fagan. And with his baby brother, Luca. Photos / Supplied

But the worry of infection and the management to avoid it is constant.

Eye drops have to be used throughout the day and every two hours Freddie’s parents apply a gel to his eyes.

Every few days, antibiotics are needed to combat infection and at night another ointment is used. Hard contact lenses, with a lubricating solution applied morning and night, have also been used for Freddie.

“I spend a lot of my time worrying about the most ridiculous things like tiny dust particles or a stray eyelash,” says Yeomen. “Or crumbs of food, or anything that might be on his bed sheet. Just all sorts of tiny little things. They become very big things, mentally.

“If he gets a little abrasion or an eye ulcer, then we know that vision loss is happening and that’s what we’re just trying to stop all the time,” she says, adding there have been multiple hospital visits and Freddie is a regular at Auckland’s Greenlane eye clinic.

“It’s becoming more and more difficult as he’s becoming mobile. He doesn’t just lie there and let us do it anymore. It’s people invading his space, which I totally understand. For months now it’s just been like every hour he’s got people putting stuff in his eyes.”

It is hoped Freddie will be able to undergo corneal neurotization to save him from going blind. Photo / Supplied

But there is hope for Freddie: A surgery that, after medical consultations as well as conversations with parents of other children with PTCD, Yeoman has learned can have life-changing results.

Undertaken just once before in New Zealand, the requirements are more complicated for Freddie, meaning the family’s only option is travelling to the United States for the operation.

However, it comes with a price tag of $144,000, including the cost to get to Riley Children’s Hospital in Indianapolis.

Yeoman and Fagan, a teacher and a lecturer, were initially stumped by the figure. But family encouraged them to try and fund-raise by setting up a Givealittle page.

Yeoman’s uncle and aunty, Phil Yule and Lesley Christenson Yule, and their son, Elliot, “made it happen” and in just over a week, friends, family and total strangers have donated over $95,000 for Freddie – something that Yeoman and her partner have been incredibly moved by.

“People have just been so generous, so compassionate and caring … we’re really blown away by it,” she says. “It’s been quite an incredible process. We are absolutely humbled by the support we have received.”

Freddie Fagan's condition means he has to constantly have gels and ointments applied to his eyes and wears protective glasses. Photo / Supplied

Provided the rest of the money is donated, the next challenge for the family will be getting to the US to see Freddie through the complicated eight-hour surgery, called corneal neurotization.

Nerves will be taken from Freddie’s calf muscle, put behind his eyes and attached to nerves in his neck, eventually creating new pathways to his eyes to allow them to work as they should.

The outcome for other children who have had the surgery is “really good”, says Yeoman. “Most of these kids, they start to have a blinking action, they start to produce tears and they just don’t have these eye flare ups that Freddie has. They have normal, healthy eyes.

“Because Freddie has so many challenges, we feel his eye sight is all the more important,” Yeoman says of her little boy, who she and Fagan describe as an “amazing” child who has “truly enhanced” their lives and is a sweet big brother to their three-month-old son, Luca.

Determined to give Freddie the opportunity to see, Yeoman and Fagan say their outlook for their son as he grows up is that “the sky’s the limit”.

“This condition is so rare that, for us, we like to think, okay, well, the sky’s the limit. We’re not comparing Freddie to anybody else. We are going to give him the best life that we can and let’s see how awesome he can be.”

• To help save Freddie’s sight, visit givealittle.co.nz.