Sitting up at night, watching her 16-month-old baby sleep, Rachel Edwards is just like any other mum.

The only difference is, without Mrs Edwards and her husband Shea watching Mia through the night, there is a chance their little girl might not wake up.

Mia was diagnosed after her birth with microlissencephaly, a rare congenital disorder resulting in a smooth brain surface. For Mia, the disorder has caused several other conditions, including spastic quadriplegia, epilepsy and chronic lung disease.

Because she has difficulties with swallowing, Mia is tube fed and needs around-the-clock care.

“We sit with her overnight because she holds her breath,” Mrs Edwards said. “We are constantly watching while she is asleep.”

National Children’s Week runs until 1 November and Ms Edwards said it was a good opportunity to raise awareness of inclusion for special needs children.

Inclusion, she says, starts with children seeing each other’s similarities instead of differences.

Mrs Edwards said her family’s positive attitude came from their supportive healthcare team and the West Moreton community.

“We wouldn’t be able to do this without the team behind us,” Mrs Edwards said.

“The Ipswich Hospital Emergency Department and Paediatric Ward know us so well. They get in, do it and help us. If we didn’t also have that support from the community, we wouldn’t be as strong as we are now.”

Part of that support comes from Clinical Nurse Stacey Yarnold, who is a key member of Mia’s team at Ipswich Hospital and the statewide Connected Care Program, which helps to coordinate care for the families of complex needs children.

Ms Yarnold is there to “hold their hands” and help the Edwards organise appointments and navigate specialists. She is also the calm, caring voice at the end of the phone who is ready to answer questions or offer advice outside of appointment times.  

“We help the parents understand what things mean for them,” Ms Yarnold said. “We are somebody they can pick up the phone to if they need advice or further help.”

The West Moreton Allied Health team is also crucial to Mia’s care, providing occupational therapy and speech therapy.

Mrs Edwards said she appreciated every effort to make Mia comfortable in her “second home”.

 “At Ipswich Hospital, they pay attention to detail and treat us well and listen to us,” she said. “That’s something people have to understand. Special-needs parents need to be listened to.”

The Edwards were told Mia might have a lifespan of between 7 and 10 years, but her deteriorating lung condition means the family is taking each day at a time.

“Everything I do, I do for Mia,” Ms Edwards said. “She is a happy girl and I want her to be included.

“If other children know that Mia can still be included in the group – sung to, read a book to – it leads them to not be scared.”