The Voices


Spinal Muscular Atrophy (SMA)

It takes just moments to understand the enormous depth of this very private couple’s grief.

Their daughter, Rebecca died in 2017, aged just five and a half months, and the intensity of their loss is so immediate, so fiercely raw, it could have been yesterday.

Jaki’s voice is the first to break. She pauses for a moment and tries to compose herself, then apologises and carries on, speaking through the tears.

“She was two months old when we found out. Her reflexes, they just weren’t there…”

Alex, her husband sits beside her and is suddenly lost in his emotions. He covers his eyes with his hand, but his grief comes in huge, unchecked waves. He can’t speak in that moment, and he won’t for some time. He later tells me even if he tried to bury his grief, he can’t. The tragic death of his first-born daughter is always with him.

“This, for parents….it just destroys you. The grief never leaves you. It never, ever goes away.”

Rebecca was diagnosed with Spinal Muscular Atrophy (SMA), the biggest genetic killer of under-2s in New Zealand. One in 54 people have the malfunctioning gene and, like Alex and Jaki, the majority are unaware they are carriers. If two carriers produce a child, there is a 25% chance the baby will be born with SMA, a genetic, muscle-wasting disease that ranges in severity. Rebecca had the most severe form; SMA Type One.

“No one should have to go through this,” Jaki says. “Rebecca was slowly deteriorating. I can’t explain what it’s like. It was getting harder and harder for her to breathe.”

In 2017, Alex and Jaki were in the neurologist’s office at Christchurch Hospital, waiting for the results of blood tests. They knew their daughter was ill, but they were confident that whatever it was, it would be treatable. Just a few minutes later, they had a conversation that would change the course of their lives forever.

“He told us Rebecca had Spinal Muscular Atrophy. He explained what it meant, and he talked us through everything, but it was so much to take in. He said there was a drug called Spinraza, but it wasn’t funded here.”

The neurologist then told them babies with SMA Type One were unlikely to survive their first year.

Alex leans forward on the sofa and rests his head in his hands. “I remember saying to him…‘you’re joking, you’re joking’…”

SMA is a cruel and brutal disease. At that moment, Alex and Jaki could never have known that within three and a half months, Rebecca’s tiny body would end its brave fight.

The hospital provided support for the family through a paediatric nurse and a nutritionist, but Alex and Jaki were largely on their own, nursing their terminally ill baby.

“Most people don’t understand what it’s like to care for a very sick baby. No one knows what goes on at home, behind closed doors. It was just the two of us, helping her as best we could, and never knowing what the night or the next day would bring.”

Rebecca was increasingly losing muscle strength. By two months, she could no longer latch-on when breastfeeding, and she couldn’t swallow. Jaki expressed breast milk and Rebecca was fed through a feeding tube.

“She was such a calm baby. She was happy and smiley and she loved her bath. She had no control over her arms or legs so I think that’s why she loved the feeling of weightlessness and floating.”

Every three or four weeks, the family met with the neurologist to check on Rebecca, and monitor the progress of the disease. Her respiratory decline was escalating, and her breathing was becoming increasingly laboured.  

“It was really difficult. Sometimes she would sound like Darth Vader, and she was coughing more and more.”

It was after a routine appointment with the neurologist that Jaki experienced a level of trauma that will stay with her for life. Alex had left the hospital and was on his way back to work, and Jaki was making her way back to the car with Rebecca.

“I don’t know what happened but suddenly Rebecca started choking.”

Jaki always carried a nasal aspirator with her; a small, manual suction pump to help her clear mucus from Rebecca’s nose, and make it easier for her to breathe.

“I found it in my bag and I quickly started pumping it. I was just squeezing it, pump, pump, pump. But she was still choking. I just kept pumping…I was desperately trying to help her.”

She reached for her phone and called Alex.

“I was telling him to come back. Please, just come back. And then she stopped breathing. I just kept saying ‘I think she’s gone! I think she’s gone!”

Alex drops his head and shakes it, as if trying to remove the deeply traumatic memory from his mind.

“It was horrific. Just horrific…”

Jaki, still alone in the middle of Christchurch, kept pumping the aspirator.

“I could see the fear in her wee eyes and I’m sure she could see mine. I would never have forgiven myself if she had left us like that.”

Rebecca, pale and grey, finally took another breath but she was a gravely ill baby.

One week later, she took her last breath. Rebecca passed away in her sleep, aged five and a half months.

Jaki has tried to find some solace in Rebecca’s peaceful death, “but it leaves me with forever guilt that I wasn’t there in that moment, holding her.”

Their daughter’s memory is always close. Alex and Jaki keep a photo of Rebecca next to their bed, and a small teddy-bear tube holds her ashes.

That was four long, hard years ago.

Jaki and Alex moved to New Zealand in 2011. They came here on a cycle tour and loved it so much, they never went home. Alex’s family are in the North of England, and Jaki is from Oban, on the west coast of Scotland. They have no family here, but Alex says they are forever grateful to their friends, the Christchurch Hospital staff, and the community who have wrapped themselves around them.

“Just after Rebecca passed, someone left an envelope in our mailbox with $1,000. It just said ‘from an angel’ and we still don’t know who it was.”

Today, Alex and Jaki have a happy, healthy, two-year-old daughter. Parents with the SMA gene have a one-in-four chance of producing a baby with the disease, but the pre-natal test revealed that baby Robyn was healthy.

“Sometimes we talk to Robyn about her big sister. We really want her to grow up knowing about Rebecca and she already knows who she is. She sometimes talks about her and calls her ‘my sister’.”

Alex says his wife has been their source of strength throughout the last four years and Robyn has brought the love and light back into their lives.

They say it’s impossible to know if they will ever learn to live with the grief of losing Rebecca, but Jaki hopes by telling her daughter’s story, it may influence the Government’s decision-makers to fund Spinraza. 

“I do understand that they have to make decisions based on a budget, but this drug saves lives. There are children dying from a treatable disease and there are medicines that will stop it. This is New Zealand. No-one should have to watch their baby die.”

“You can’t shut the door on parents and walk away. If we fund this medicine, we can stop our children dying.”

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