Strong Voices

The Wallaces’ five-week-old baby girl, Edin, was in Starship children’s hospital in Auckland with unexplained seizures.

Her mother Karen was by her side. Edin’s father Rob was nearby in Ronald McDonald House with her two brothers, Ben, 6, and Ryan, 4. Whatever was going to happen to Edin, the Whangārei family was going to face it together.

“Life got flipped upside-down very quickly for us,” Rob says. Edin was in the grip of infantile spasms, or catastrophic childhood epilepsy, which is drug resistant and associated with a range of other conditions.

Two years later Edin was diagnosed with the rare genetic disorder CDKL5 – a condition only discovered in 2004. To their knowledge she was the second child in New Zealand to be diagnosed.

“It took a long time to get the diagnosis because her bloodwork got sent off to Cardiff, in Wales,” Karen says. Karen, meanwhile, had been doing her own Google research after spotting a reference to CDKL5 that seemed to fit Edin’s symptoms. “By the time we got the confirmation I had already got my head around it.”

While the diagnosis didn’t make a difference to their everyday care for Edin, it was important for understanding her condition.

“At the end of the day it’s only for the peace of mind – to find a reason as to why. It’s not a hereditary thing; it’s completely out of the blue,” Rob says.

Apart from her seizures, Edin cannot speak or walk. She has gastro-intestinal issues and is mostly fed through a tube in her stomach, and she has limited use of her hands. She needs 24-hour, seven-days-a-week care and the whole family pitches in.

The Wallaces’ instinctive reaction to form a tight circle around Edin has been their means of coping and their way of life for 10 years.

“I basically have done the nights and Karen has done the days,” Rob says. “Even on the nights that Edin will sleep through, I will wake up at 3am to see why she is so quiet.”

Karen says the tag-team works. “I am someone who needs my sleep and I can’t function without it. And Rob is a night owl.”

Ben and Ryan, now 17 and 15, are an essential part of the team. “The boys have been a great help. They have been extra eyes and ears,” Rob says. “Once we decided we had to take it on as a family unit, we did it.” Edin attends the Blomfield Special School’s satellite class at Morningside Primary School.

Aside from that, the family provides all her support. Karen acknowledges that they have been reluctant to hand over Edin’s care to others. “We would be more stressed and lose more sleep if she was with somebody else and we weren’t comfortable,” she says.

For 10 years, doctors have been trying to bring Edin’s seizures under control, trying one drug after the other. She is now on a medical ketogenic diet, a special high-fat, low-carbohydrate diet that is showing some success in limiting her seizures.

Financially, things have been extremely tough as neither Karen nor Rob is available for full-time employment. Rob, who has been on JobSeeker Support, has come under pressure to find a job – something he says is impossible when he is on nights with Edin.

“It’s been 24/7 for 10 years. We have both had to give away our KiwiSavers.”

But Rob says their lives changed after an introduction to IHC Family Liaison Jim Callaghan. Jim arranged a face-to-face meeting with needs assessment agency NorthAble, and as a result the extent of Edin’s needs has been reassessed. The Wallaces have switched to individualised funding through Manawanui and now have a navigator to help them access the services they need. Manawanui is an organisation that manages self-directed funding for disability support services.

The financial pressure has now eased. Karen is classed as a full-time carer on a Supported Living Payment through Work and Income while she manages Edin’s funding. Rob will be an employee, paid through Edin’s funding package.

“It has changed our lives meeting Jim. It is a shame it didn’t happen 10 years ago,” Rob says. “There are not enough Jims out there.”

Caption: Edin Wallace has a strong team of supporters behind her.