Rachel and Shea Edwards with their daughter Mia. Mia has a rare brain condition that comes with a life expectancy of 7 to ten years.
Rachel and Shea Edwards with their daughter Mia. Mia has a rare brain condition that comes with a life expectancy of 7 to ten years.

Baby Mia’s fight for life with rare brain condition

FOR Rachel and Shea Edwards every day spent with their daughter Mia is a blessing.

Mia was diagnosed with a rare brain condition just two days after birth.

The condition is so rare it doesn’t even have a name, but she is the 13th known case in the world.

Mia lives with the symptoms of microlissencephaly, which means having a smaller sized head and a smooth brain. It means she suffers seizures and lives with quadriplegic cerebral palsy and respiratory issues.

Rachel and Shae were initially told the condition comes with a life expectancy of 10 years.

The first eight months of Mia’s life have not been easy and her parents don’t know just how long she has left.

“Recently Mia has been in and out of hospital for her chronic lung disease due to her respiratory issues and is currently on comfort measures so we don’t know how much longer we will have with her,” Mrs Edwards said.

“I can’t even begin to explain the emotional roller coaster Shea and I are on.

“Every day I get asked how I want my baby to go.

“How can I let her go? She is part of me, she is my blood, she lived inside me and grew inside me. I have scars on my body permanently marked where she came from.

“She’s mine and all I have. I’m not ready. I’ll never be ready.”

The family is hoping the community will be able to dig deep as they navigate the next steps in Mia’s journey.

“My husband Shea is a full time nursing student and I have had to quit my job to become Mia’s full time carer,” Mrs Edwards said.

“Being in and out of hospital makes it financially difficult for Shea and I to keep on top of the basic life expenses of house bills, petrol, water, electricity, phone and internet and most importantly food.

“Constantly being in a hospital can get expensive when you can’t make your own meal or coffee at home and we are also limited to grocery shopping as we don’t always have the fridge space or cupboards to store food.

“We would kindly like to ask if anyone is able to help us out even the smallest amount we would be so grateful and it would really mean one less stress for us at this time.”

The family has set up a fundraiser on Facebook with a goal of raising $10,000 to help cover expenses.

Almost $3,000 has been raised so far. To make a donation visit the Facebook page My Life with Mia.