Creating magic out of dust and rocks: Meet Susan Furniss-Radley

 When Waterford woman and former pilot Susan Furniss-Radley’s life darkened, she chose to absorb the light. Here, she speaks to Kate Demolder about her son River, her company Dust + Rock and the appreciation she feels for everyone around her, especially when the chips are down.

Susan Furniss Radley, Photograph Moya Nolan

WE MEET in the echoing, cavernous, and somewhat cluttered entryway of the Temple Theatre, the former nightclub and church located next to Temple Street Children’s Hospital in Dublin 1.

I’ve been brought here by Susan Furniss-Radley, a blonde, youthful and backpacked mother of three boys (Rex, 11; Hunter, 9; and River, 5) from the Temple Street canteen. She had politely asked, “Do you want to come somewhere quieter?”, before stopping to smile with everyone on our three-minute journey across the busy street.

She knows these roads, the parking wardens, the cracks in the pavement. She’s come to know them, almost better than her Dungarvan home, as Furniss-Radley has been living in Temple Street Hospital for five months with her husband in family accommodation, as her youngest, River, is treated for Rasmussen encephalitis.

Known also as Rasmussen syndrome, River’s case was typical, in all the ways an atypical diagnosis can be; a rare, progressive, chronic encephalitis (inflammation of the brain) affecting one hemisphere (one side) of the brain, affecting mainly young children. Forgive yourself for not having heard of it, neither had Susan.

“It’s warm today, isn’t it?” she says, speaking cheerily to administrative staff in the hall we meet, filled with memorabilia such as signed Irish rugby jerseys and oversized stuffed toys. “Not as hot as River’s room the other day,” one laughs. “Remember that!” Susan replies, grasping this woman’s hands as two soldiers in the trenches might.

River was born healthy, perfectly healthy. The youngest of three, he idolised his brothers, looking up to them at every step. Nothing caused him harm or fuss, until at three and three months, in October 2022, he had a seizure in the back of the family car. Susan and her husband thought it was a stroke. 

“That night, we ended up in University Hospital Waterford, where he got a diagnosis of epilepsy,” she smiles, stirring her coffee and meeting her eyes to mine. “So we went home and started taking anti-epilepsy tablets. Everything was fine for two weeks until he started having seizures every 10 minutes.”

From there, River lost his speech. This was November.

Susan Furniss-Radley, with (tall to small) Rex,9; Hunter, 7 and River, 5.

BORNE OF DISASTER

“We were in such a haze,” she smiles now, her tired, slight eyes the only giveaway. “All of a sudden we were up here — I didn’t even know where Temple Street was.” A series of MRIs and a weakening on the right, dominant side of his body dictated that River had a diagnosis of Rasmussen, and that his life would be changed forever. “It had been ruled out at first because it’s so rare, it’s one in three million,” she tells me.

“The scariest part was when he stopped recognising us and his brothers, who are living at home with my mother who has completely uprooted her life to be there.

“Facial recognition sits on the side of the brain that was affected in River’s case, so that was hard. But his attitude towards it has been just remarkable — on the days when his right leg wouldn’t work, he dropped to his knees and began walking around like a cat.”

In the years before I meet Furniss-Radley, indeed before she’d had River, she had been a successful commercial pilot with superiority and a good salary. She flew, for more than 11 years with Stobart Air, as her husband worked in accountancy.

An accomplished pilot, she took a break from flying in 2009 when her brother, Captain Derek Furniss, an instructor with the air corps, tragically died in a plane crash during a training flight near Cornamona in Co Galway. “My now-husband and I went travelling, which is where I came up with the idea for Dust + Rock,” she says, as she gestures to her forearm. 

Susan Furniss Radley's Dust + Rock Travel Cubes

Sustainably made and loved, Susan’s wrist pocket — which will be stocked in Brown Thomas and Arnotts from June – was borne of disaster, when she was separated from her then-boyfriend while travelling South America. “Women’s clothes never have pockets!” she laughs, citing how she used to place her phone and keys in her husband Mark’s bag as they ventured through Bolivia. “I had my backpack but never wanted to bring it out during the day. So I dreamt of a kind of an elasticated wallet for my wrist to put my things in, that I wouldn’t have to worry about leaving behind.”

She brought the idea to a seamstress when she got home to Dungarvan and was barraged with enough queries and compliments while walking through Dundrum Shopping Centre to consider a limited collection line. “It wasn’t even nice at that stage,” she laughs. “I just didn’t want the hassle of carrying around a bag.”

So spurned on her business plan, creating colourful, sustainable and functional wrist pockets, and more recently travel pockets to neatly fit your belongings into suitcases or storage (fans of organisation shows like The Home Edit will know) for people on the move. “I’ve had so many people message me saying they received it as a gift and never thought they’d use it — but now never leave the house without one, and don’t even look at bags when they go into shops.”

Susan Furniss-Radley. Photograph: Moya Nolan

"I CAN'T BELIEVE WE GOT SO LUCKY"

The business now exists in her hospital room, deep in the underbelly of Dublin 1, with a bed, a sink and “not much else”. River has since had his surgery — a hemispherectomy, which has essentially disconnected the half of his brain that was marred by infection — and will continue with intensive physiotherapy in the autumn. It’s not a cure, it’s a solution, she smiles, but everyone’s circumstances are relative. 

“His brothers have seen him — and struggled to be honest,” she says. “They’re not used to seeing their baby brother in a wheelchair, so it was difficult. But we’re hoping they’ll all be in the same mainstream school together and will learn to look out for each other and create their own relationship.”

Here she stops to take a breath. “You know, at the beginning of all this, we thought we were going to have to move to London or the US or somewhere to fully tackle this. “We were even looking at China at one stage,” she says, jutting out her hands. “But here we had the answer. Right in front of us. We have the best neurosurgeons in the world within these walls, highly educated people, willing to work on our boy, that made us feel so cared for and understood and appreciated the minute we met them.”

She takes one final breath. “I can’t believe we got so lucky.”

There aren’t many truisms in pediatric care, especially for children with a disability, a medical speciality that might best be described as a multidisciplinary effort to meet people where they are, while also supporting and celebrating their personhood and their lives. An oftentimes lonely pursuit, there’s no formulaic way to meet patients and families where they are in their coping while understanding that life can reconstitute on the other side of catastrophe and that people can find joy in living again on the far side of loss.

Susan Furniss-Radley. Photograph: Moya Nolan

"YOU'RE GOING TO BE FAMOUS"

Susan, Mark, River, Rex, and Hunter will be alright again. They will succeed, they will cry and they will grow to love their new lives, free from the fear of the unknowable seizures they all once experienced in the back of their car.

I’ve thought every day since then, following three years of healthcare-related worries and my own personal experience with growing up with an intellectually disabled sibling, about the strange axis around which we all eventually become healthcare providers — each of us too becoming a patient, in time.

I’ve thought a lot about Susan too, laughing about the lacklustre nature of living in hospital accommodation while simultaneously growing more thankful as she recites the full name of each doctor she has met, and how they individually made miracles in all of their lives. (“In a way, we had no choice when it came to River,” she says in hushed tones. “We had to go for the surgery — I can’t imagine what it must feel like for parents who have to agonise over that decision.”)

As a person, a mother, a parent and a businessperson, Susan is extraordinary; picking up pieces from the earth and creating masterpieces. From her unusual children’s names (“I remember thinking about his future life when he was born,” she says sweetly. “River, you’re going to be famous. Everyone is going to remember River.”) to her repeated pivots over the hurdles life has given her. 

Her words are honest and hold meaning, infectious and never awkward, generous without being pithy. Those who have experienced situations like the Furniss-Radleys know better than to suggest that everything will be alright, because, quite frankly, who knows if they will be. But as Susan has — and is — we can try, loaded with a hope too fragile to speak aloud, that we all might one day eventually, in different, unusual, and even metamorphosing ways, be OK.

A few weeks after our interview, we receive an update, a welcome one. “River is recovering at home in Dungarvan. He is happy and doing well.”

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