Walking to raise awareness
The parents of a toddler with a rare and complex condition are inviting their fellow Nelsonians to put their walking shoes on this Sunday.
Matt and Sarah McLarin’s youngest daughter Emily has Prader-Willi Syndrome, a genetic disorder which affects the way a person’s glands secrete different kinds of hormones.
Known as PWS, the syndrome’s many affects can include low muscle tone and failure to thrive as infants, slow growth rates, small hands and feet, facial characteristics, reduced cognitive abilities, abnormal body composition, delays in learning to speak, behavioural problems, sleep disorders, learning delays and incomplete puberty.
It can also stop people from ever feeling full, which causes them to be constantly hungry and can lead to them becoming obsessive and compulsive about food.
PWS occurs in about one in every 25,000 births and affects around 150 New Zealanders, including four other people in Nelson.
Emily, who is 18 months old, was diagnosed with PWS two weeks after her premature birth.
‘‘She was just really floppy and she couldn’t move and she couldn’t suck,’’ Sarah said.
Matt said a blood test led to the diagnosis.
‘‘It was a pretty emotional time and it was kind a relief because we had a name for it and could start reading about it,’’ he said.
‘‘But then we started reading about it and the implications of it became hard to get your head around.’’
Sarah said PWS means Emily does not have the ‘‘unlimited potential’’ typical newborns have.
‘‘There is a huge list of things that she might have trouble with. It’s not like a clean slate to start with,’’ she said.
However, despite the challenges she faces, Matt and Sarah said Emily had come a long way.
‘‘The first six months she didn’t move and she fed through a tube and there was very little interaction,’’ Matt said.
‘‘These days, though, she is a go-getter, she is really social and it’s hard to remember the challenges she has already overcome,’’ Sarah said.
To raise awareness of PWS and money for research into possible cures, a 3km walk called One Small Step for Prader-Willi Syndrome is being held this Sunday starting at the Tahunanui Beach barbecue area at 10am.
It’s the first time the walk has been held in Nelson and similar events are being held in Auckland, Wellington and Christchurch.
The walk will head down the beach and around the playing fields and be followed by a barbecue lunch or BYO picnic with bouncy castle, facepainting, spot prizes, a raffle and music from Kath Bee.
Sarah and Matt hope people come along and support the effort.
‘‘I want to find a cure for PWS before my daughter is hungry all the time.
‘‘Every bit helps and it’s about having some fun,’’ Sarah said.
Matt and Sarah would like to thank the ‘‘fantastic’’ sponsors who have made Sunday’s event possible.fucredit
To find out more and make donations, visit onesmallstep.fpwr.org/dw/walking/location/490
- © Fairfax NZ News