When Mollyjane turned 10, the first thing her mum wanted to do was take her to hospital. Not because she was sick, but because she wanted to show doctors that the child they said wouldn’t live beyond a few days had made it to double digits. “I said to them, 'I promise you that she'll walk down here when she's 10’,’’ mum Jessica said.
“They told us we had maybe six months,’’ Jessica said. “They told us, take her home and love her, in those exact words. And then once I got home, I just thought I can't stop. And I didn't care if she didn't walk or talk. I just wanted to get her home and love her. But then once I got home, I knew we had to do more.’’
Mollyjane, known affectionately as MJ, was born early and was unwell from the beginning but by three days old she had a cardiac arrest, 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,’’ Jess said. “It's a feeling that I don't think any mother should hear. So, we had her baptized, expecting her just to slip away.’’
However, a doctor from the UK spoke to Mollyjane’s specialists and said she may have a disease called Carnitine-acylcarnitine translocase (CACT). It involves a defect in the genes that means her body can’t transport certain fats into her cells. It affects every cell, every organ in her body.
By the age of five, MJ had experienced five cardiac arrests and had over 400 days in hospital, but she is bright, happy and thriving with no major impacts of her brain injury.
The life that everyone has experienced during the COVID-19 pandemic is the life that Jess and her husband Joe live every day to protect MJ. She can’t easily do sleepovers without a lot of planning and teaching others how to care for her, and school camps are difficult unless I attend. Even the public pool is avoided due to concerns regarding infection. “I once let her go to a party at an indoor trampoline place, it seemed like a good idea at the time to let her be a kid,’’ Jessica said. “She got a vomiting bug and she was in hospital the next day in cardiac arrest.
Sometimes, I sleep through the alarms that I’ve set to feed her during the night. I think to myself ‘please don’t let her have died in her sleep’. She needs feeding about 4 times overnight. Yes, it’s exhausting and I wouldn’t wish MJ’s life on anyone.’’
“I’ve had three close friends lose their child die by the age of 10 - these were all from genetic diseases.’’
They are involved in Jeans for Genes because they’ve seen genetic disease impact so many of the families they’ve met through their local hospital and support groups.
The family has toured the labs at Children’s Medical Research Institute and were impressed by the gene therapy research they saw.
“If we could invest in gene therapy now, the next generation won’t ever have to go through this. I just wish every parent living with a child with a genetic disease could go behind the scenes to Children’s Medical Research Institute, as we have, and to see there are people fighting for your children behind the scenes,’’ Jessica said. “Because sometimes you get so lost when you're spending weeks and months in hospital, you do get lost and you feel like you're so alone. I just didn’t really realize just how many people are fighting for your children.’’
Learn more about Carnitine-acylcarnitine translocase (CACT) here.