SPECIAL GIRL: Aria Manderson.While most 13-month-old babies are happily crawling and learning to walk, every day is a battle for little Aria Manderson.
Diagnosed in February with a rare, potentially terminal genetic disorder known as Spinal Muscular Atrophy (SMA), the Cessnock girl has been in and out of hospital since she was three months old.
SMA is the biggest killer of children under two years old in Australia with nearly 700 deaths a year.
There is very little funding for the condition in Australia, but stem cell treatment is available in China, India, the USA, Switzerland and Germany.
The disorder affects the nerves that control muscle movement, resulting in messages not being sent from the spinal cord to the muscles.
The disease will progressively degrade the muscles and eventually begin to affect the heart and lungs.
Aria’s parents, Melanie Werdmuller and Michael Manderson, manage her care on their own with some family help, but her specialised treatment is becoming beyond their means.
Her medical fundraising is supervised by Lions Australia; and Aria’s grandmother, Michelle Bowen is coordinating a fundraising effort to support the family with her at-home care.
“We are seeking assistance for every day needs such as expenses for constant medical care and specialist treatment, travel, mobility equipment, breathing assistance equipment and we are currently in touch with specialists worldwide to find treatments that will help her and give her a good quality of life,” Michelle said.
A beautiful, loving, happy baby girl with a magical smile, Aria can smile, laugh, sing and talk – but she cannot move her legs, torso, shoulders, or body.
She has breathing difficulties, her temperature has to be constantly monitored and she has to be protected from germs and disease.
“Aria is really bright and although I’m sure she knows she is different, she is a very happy baby with a beautiful personality,” Michelle said.
As Aria has a very low immune system, the home must be kept hospital clean and at a constant temperature.
She has breathing assistance equipment, suction equipment, oxygen and a feeding tube, and must have constant physiotherapy, pulmonary percussion, massage and position changes to ensure liquid does not pool in her chest.
But she happily tolerates all this, her grandmother says.
“She loves games and funny sounds. She loves cartoons and adores music. She sings along to many songs,” Michelle said.
“She gets very excited when Kaida (her six-year-old sister) or her Daddy come home or if we visit.
“She communicates a great deal with her eyes. She will stare at what she wants and prattle away to tell you.”
In March, Aria was in John Hunter Hospital in a medically-induced coma after she suffered a collapsed lung, then cardiac arrest.
Much to the surprise of her medical team, she miraculously pulled through.
Aria recently celebrated her first birthday which Michelle said was a “profound joy” for the family.
Their next goal is to take Aria overseas for stem cell treatment.
“If we had a cord blood bank in Australia, SMA babies could be treated here and most could be saved,” she said.
A benefit day to support Aria’s family will be held at the Bellbird Hotel this Sunday from 2pm to 9pm, with live music, markets and raffles.
Local acts including Eye On You, Pam and LesGully, Tim Usher and Mick White will perform.
Donations can also be made online here.
Eye On You will play at the fundraiser for Aria at the Bellbird Hotel on Sunday, July 20.
This story Administrator ready to work first appeared on Nanjing Night Net.