There are so many costs to come with being a mum. Clothes, toys and all of that gear can really add up.

But, the one cost that no parent wants to ever think about is the cost of their child’s funeral.

For the Fitzgerald family, that’s precisely the cost that they will soon have to deal with. Like any mum and dad, this family struggles with work-life balance. Add in a terminally ill child and it makes the stress just that much more. With dad only getting paid for the days that he works, spending time with his daughter seemed almost impossible.

As a baby, their daughter Indie did what every little one is supposed to do. She cried, she crawled and she started to cruise. Somewhere around 20 months, Indie began to regress. Instead of continuing on meeting milestones, the toddler’s development stopped. Not only did it stop, but it began to go backwards.

She was first diagnosed with Hypotonic cerebral palsy (a condition that causes the child to have little control over their head as well as floppy muscles). Doctors soon realised this diagnosis wasn’t right, and told the parents that their daughter actually had cerebellum atrophy (degeneration of the neurons in the area of the brain that controls muscle coordination).

Again, they were wrong.

The family decided to move from their home in Queensland to Melbourne, hoping to find better medical care there. In January (of 2015) doctors finally got Indie’s diagnosis right—she had Infantile Nueroaxonal Dystrophy (INAD). The very rare degenerative disorder (estimated to only affect 1 in every 200,000 children) typically doesn’t show up until children are toddlers. Even though children with INAD (like Indie) appear to be developing completely on schedule, they’ll typically start to experience difficulties walking sometime between 14 and 18 months. Along with this symptom, INAD may also cause general muscle weakness, decreased muscle tone, weak or absent reflexes, lead to respiratory tract infections and cognitive decline.

INAD robs children of the ability to move, speak, see and eventually understand what is going on around them. While there are treatments aimed at preventing some of the issues that can arise with INAD (such as taking antibiotics to prevent or treat respiratory infections), the disease has no cure. Children diagnosed with INAD typically don’t live past their 10th birthday. It’s been less than two years since now-4-year-old Indie was diagnosed.

According to her family’s Go Fund Me page, “Indie can no longer move by herself, is PEG fed, cannot communicate and will lose her sight and hearing.” The family also adds, “Our goal is to make Indie’s life as happy and comfortable as possible. With doing the things she enjoys and making memories that will stay with our family forever is all that we want.”

But, those memories come at a cost.

Parents shouldn’t ever have to choose between spending precious time with an ill child and going to work. For this family, that’s exactly what’s happening. Mum Bec figures that it will take at least $700 a week for the family to survive. As if spending time away from your kids when working isn’t hard enough on its own, imagine if you knew that your child might not be there a day, a week, a month or a year later.

This family can’t afford to not work. And, they can’t afford not to.

The Fitzgerald’s know that they’ll likely lose their daughter in the next few years. Even so, they keep going, making the most of their time with her. With the help from the Go Fund Me page they are now better able to balance work and their life with their child. This is allowing them to spend some (but, not all) of their time away from work and with their beautiful daughter.

If you feel you’d like to show some support for this local family, you can do so at the link below. Every little bit helps.

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Author

Erica Loop is a mum, parenting writer and educator with an MS in child development. Along with writing for websites such as PBS Parents, care.com, Scary Mommy, mom.me, Modern Mom, education.com and others, she also is the creator of a kids' activities and art blog.

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