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Donning denim for a worthy cause

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When Mollyjane* pulls on a pair of jeans tomorrow, it will be an act some doctors thought she would never be able to make.

Affectionately known as ‘MJ’, she is set to don denim alongside her family and St Therese’s Primary School, New Lambton, in a bid to raise money for a cause close to her heart – Jeans for Genes Day – this Friday 7 August.  

MJ, a premature birth who was unwell from the beginning, suffered a cardiac arrest at just three days old, was put on life support, and sustained significant brain damage.

“I’ll never forget the feeling of being told that she wasn’t coming home,’’ mum Jessica Rothwell said.

“It’s a feeling that I don’t think any mother should hear.

“So, we had her baptised, expecting her just to slip away.’’

However, after speaking to a doctor in the United Kingdom, the family was able to receive the answers they needed.

MJ was diagnosed with Carnitine-acylcarnitine translocase (CACT) – a life-threatening genetic disease that currently has no cure.

“They told us we had maybe six months,’’ Jessica said.

“They told us: ‘Take her home and love her’, in those exact words, but then, once I got home, I knew we had to do more.’’

By the age of five, MJ had experienced five cardiac arrests and had over 400 days in hospital but, when she turned 10, the first thing her mum wanted to do was take her back to hospital.

It wasn’t because she was sick – Jessica simply wanted to show the doctors that her daughter had made it to double digits.

Jeans for Genes Day is a national event that supports the Children’s Medical Research Institute and helps find cures for children’s genetic diseases.

“If we could invest in gene therapy now, the next generation won’t ever have to go through this,” Jessica said.

“I just wish every parent living with a child with a genetic disease could go behind the scenes to the Children’s Medical Research Institute, as we have, to see there are people fighting for your children behind the scenes.

Mollyjane with her stepfather Jonathon and mum Jessica.

“Because sometimes you get so lost when you’re spending weeks and months in hospital – you feel like you’re so alone.

“I just didn’t really realise how many people are fighting for your children.’’

MJ is an official Jeans for Genes Day 2020 ambassador.

Go to MJ’s fundraising page if you’d like to donate.

*Surname withheld for privacy.

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