Riley’s friends roll in
Ashleigh Brown rocks slowly in a chair looking down at her baby, gently stroking his small hand.
He is sleeping peacefully in her arms. ‘‘He’s a good baby,’’ she says. ‘‘He only cries when he has a seizure. They are horrible. He can stop breathing with them, and then he can start twitching, lip smacking and is body jerks. It’s not nice to watch.’’
Riley has the rare congenital disorder, Zellweger spectrum. There is no cure, and children with the disorder do not typically survive beyond the first year of life.
‘‘Some babies live for weeks, some live for up to three years. Our pediatrician said it could be tomorrow that he doesn’t wake up.’’
The 24-year-old Alexandra woman said there were no signs during her pregnancy to indicate anything was wrong.
She and her husband Peter had struggled to get pregnant, and were so happy to find out they were having a baby.
‘‘We finally had everything we wanted in life. We were so happy we got pregnant. We had been trying for a while.’’
That elation turned to heartbreak when she needed an emergency C-section and their ‘‘world stopped’’.
Fundraising organiser Ashlee Sutherland co-ordinated dozens of volunteers to help make over 14,000 cheeserolls to support Ashleigh and Peter Brown whose 10-week-old son Riley suffers from Zellweger spectrum. Photo: Jo McKenzie-McLean/FairfaxNZ