Grappling with the heartbreak and raw grief after losing her baby Bella less than three weeks after she was born earlier this year, Emma Tuddenham has channeled her feelings into raising awareness of the condition she had no prior knowledge of, lobbying governments for action and trying to save other little lives.

The condition is the leading genetic cause of death for children aged under two in Australia, with one in every 35 people carrying the altered gene which causes it.

"One in ten thousand babies are born with it but you don't really hear of it," Ms Tuddenham told The Courier.

In August this year, during SMA awareness month, Ms Tuddenham organised Move for Bella and asked people to commit to moving their bodies for 31 days to raise money for babies with the condition.

Through this fundraiser she raised $28,000, but hasn't stopped there.

Having completed many triathlons and ultra runs in her life, she wanted to design an endurance challenge for people to push themselves while simultaneously raising funds to be donated to charities.

For the last 10 weeks dozens of riders have been training hard in preparation for the Ride for Bella, to take place on December 4.

The fundraising event will see 18 solo riders push themselves to pedal on spin bikes from 5am until 5pm.

In addition to the solo riders, more than 30 teams consisting of several riders will share the commitment to keep the pedals moving for 12-hours straight.

In signing up, each participant was required to raise $1000 - meaning Ms Tuddenham's fundraising tally for this year has now clocked over $57,000.

It means she is almost halfway towards reaching her target of $120,000 by the end of the year.

The money raised in the lead up to and on the day will be split between scientific research for SMA, Spinal Muscular Atrophy Australia Inc and be donated directly to five families with children living with the condition.

"It is a big event but it's for a really good cause," Ms Tuddenham said.

Ms Tuddenham said the rideathon was not only helping participants to improve their own fitness but was also contributing to a bigger cause.

"When we designed the event we didn't think anyone would do 12 hours. So it's inspiring that people signed up to do it.

"I know they will be challenging themselves and it won't be easy.

"They're not all endurance athletes, but people who want to help and raise money. There will be so many people of different fitness abilities doing it."

All of the advocacy and work she has been doing for SMA this year has been in memory of little Bella, so while conceding it would be an emotional day for her and her family, she said it would be "really worthwhile" in her efforts to save other babies and prevent other families from experiencing the trauma hers has.

"The pain will always be there, but helping other people by spending time on this is how I feel like I can be her mum," Ms Tuddenham said.

"It has helped me heal."

RELATED COVERAGE: Mum's push to introduce more testing in memory of her daughter Bella

On April 28 this year Ms Tuddenham gave birth to what was initially believed to be a healthy baby girl, though 24-hours after coming into the world Bella started displaying limited movement in her arms and legs.

Her family desperately watched on as Bella's condition rapidly deteriorated and doctors completed test after test to find the cause.

After 15 days Bella was diagnosed with SMA, a genetic condition that affects the nerves which control muscle movement.

By the time of the diagnosis Bella's condition was too far advanced to treat - she could not move her legs and was struggling to breathe on her own.

At just 20 days old, tiny Bella died in her mother's arms, surrounded by her dad, brothers and sisters.

Since her baby's death Ms Tuddenham has been on a mission to ensure her family's pain and Bella's short life were not in vain.

While there is no cure, early detection enables parents to make informed and empowered choices. It also means treatment can begin early to give a baby a stronger chance at life.

So aside from fundraising for research and to help ease the financial burden on other families, Ms Tuddenham has advocated for change to save lives.

This has included advocating for more widespread awareness of the simple genetic testing options available for mothers and their partners prior to or in early pregnancy.

She has also lobbied the state government to test for SMA through the Newborn Bloodspot Screening (NBS) test, or heel prick test, which is already offered for all newborns in Australia.

"Unfortunately Victoria doesn't offer SMA testing for newborns so families are usually finding out when the baby is disabled and they either die or live heavily disabled.

"But early detection means treatment. If babies get it early enough they can go on to live a normal, healthy life."

The community is invited to attend the event at Hot Temple next Saturday, December 4, to cheer riders on.

There will be a coffee van, music playing, exercise equipment for people to try out and a box for donations.

To donate, visit: https://move-4-bella-rideathon.raisely.com/donate

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