Clare Decena will complete the Bloody Long Walk in honour of her niece, Mara, who died shortly after birth
Clare Decena’s niece, Mara, had only been in the world for five days when she passed away at Royal North Shore Hospital on 7 September 2022.
Meeting her for the first time in the NICU (Neonatal Intensive Care Unit) just the day before is something Clare will never forget. “The first time I saw her I was just so overwhelmed because she was so tiny,” she says of her niece. “But she was so beautiful. It looked like she wasn’t doing too well, and that confirmed that it would be an absolute miracle if she pulled through. But it was really hard to accept that because there was no reason for it – there was no explanation at the time as to what was happening.”
Mara, the daughter of Clare’s brother, Amante and his wife, Rachel, was born 20 days early but was otherwise healthy. Then, within 24 hours of her birth, her breathing deteriorated and her condition declined rapidly.
Six months on from Mara’s death, following extensive genetic testing, Amante and Rachel finally discovered that their daughter had been born with an extremely rare gene mutation, called de novo, which is a form of mitochondrial disease (mito).
Mito is a debilitating, potentially fatal genetic disorder that robs the body’s cells of the energy they need to function properly. It can strike at any age, but most children diagnosed with mito die in the first five years of life.
Clare says having that diagnosis helped the family to understand what had happened to Mara, and from there they became aware of the Mito Foundation, which was established in 2009 by Mona Vale couple Doug and Margie Lingard who have lost two children to mito.
Clare with her brothers Conrad and Amante on the walk last year
Each year, the Mito Foundation holds The Bloody Long Walk, a 35km trek along the Northern Beaches coastline from Palm Beach to Manly, to help raise funds for the foundation. Since its beginnings, the foundation has contributed more than $9 million in funds to medical research; provided support to sufferers and their families; and educated the medical profession about the disease. They have also lobbied successfully to have Maeve’s Law passed, legalising mitochondrial donation, an IVF-based technique which offers hope for families with certain forms of mito.
Clare and her family have an annual tradition of taking part in The Bloody Long Walk in memory of Mara. This will be Clare’s third time tackling the trek, which takes seven to eight hours. “You get to meet people who are affected by mito, and there are a lot of opportunities to talk about Mara and what happened to her,” she says, admitting it’s good to have ‘that space to be able to share a story and spread awareness.’
In June last year, Rachel gave birth to a healthy girl, Mara’s sister, Aster. Clare says Aster’s arrival has helped to ‘heal us in so many ways.’
This year Clare hopes to raise $2,000 for the Mito Foundation, and says the event is ‘really uplifting,’ with friendly volunteers to cheer on participants. There are refreshment stations, toilets and medical aid available on the course too. “I love the area, it’s just so beautiful,” she says. “And being able to do it with family and friends is quite nice.”
BLOODY LONG WALK
Sunday 3 August, 6.30am
Governor Phillip Park, Palm Beach; ends at Manly Corso
bloodylongwalk.com.au
