Ri­ley’s friends roll in

Central Otago Mirror - - FRONT PAGE - By JO MCKEN­ZIE-MCLEAN

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

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