Hayley has two beautiful daughters with PRS, Amelia and Grace. The below letter captures Hayley's thoughts and feelings about how tough the everyday aspects journey can be, and is something that so many PRS parents can relate to.

In 1989 things were a LOT tougher. 

Here are photos of our daughter Stephanie, born in Perth 1989. She has given permission to share these with you.

Basically Stephanie was born and diagnosed with PRS within hours of life. She spent 39 days in the neonatal nursery at PMH and was always very difficult to feed orally...

This is our little girl Zara, born in 2014 - a surprise third for us, arriving more than 5 years after her sister. It only took a few seconds to realise that something wasn’t right with her breathing and she was whisked off to the NICU, in expert hands. 

Our baby was born with Pierre Robin Sequence and this is her story. When Maddie was born we did not know what PRS was and watching you tube videos of other families dealing with it helped us. So we are now returning the favour for other families of PRS babies to see Maddies journey and hope it brings some light into their lives.

July 29th 2008 our little surprise package arrived. After a speedy delivery Olivia was taken to the special care nursery (SCN) at Hurstville Community Private Hospital where she was struggling to take each breath.

Kyle and I found out we were pregnant with our second child and were so excited, our first child had terrible colic for about 5 months and we didn’t get to enjoy her as a newborn, I was really excited to enjoy my second baby. 

Alice Lee Emeny arrived via emergency ceaserean due to having no amniotic fluid left on the 17th December 2008 at 17:17 at Gympie Hospital.  I could hear her crying and had a look and all looked well to me.  

The following is an open letter from mum Jenna about taking her daughter Matilda out in public with a feeding tube in place. So many aspects of PRS are challenging, but sometimes the simple things are the most challenging of all.

It started with my baby being whisked away with breathing problems. Your child has a cleft palate. Did you know? Did it show on the ultra sound? Then as you all know comes the shock. 

This video is a story about my son Balin (Bay-lin).  The aim of this presentation is raise awareness for PRS but also to inspire families of children with this and other life threatening conditions. Time is fleeting. Nothing stays the same. A hard day today, could be a monumentus day tomorrow. Don't give up. Reach out. Find the help you need and hold tight to your loved ones for tomorrows another day.