2019-11-03 by W.M.
Baby Dot, we’re walking for you
But just over four months on, those same hearts are breaking with the devastating diagnosis the cherished little girl has an incurable disease.
“We noticed she was very little, she wasn’t putting on weight, she was vomiting a lot and then it got to the point we were noticing she wasn’t the same as other little babies born at the same time as her – she was really sleepy and very floppy like a newborn,” Mrs Georgiou said.
A series of tests at the Women’s and Children’s confirmed three weeks ago little Dot has mitochondrial disease, a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure – one in 5000 children are born with a severe or life-threatening form of “mito”.
“We went into a meeting and got told ‘there is no cure, no treatment … and now we are going to talk about palliative care’, no family should ever go into a meeting like that when you are holding your baby and hear those things,” Mrs Georgiou said.
“Before we found out, we always called her our dream baby, because we would put her down and she would go to sleep straight away, put her in the little rocker and she would just look around, there was never a fuss, never crying … we now know it is because she can’t produce the energy (to do those simple things.
“She doesn’t smile very much because of the energy it takes, so when she does we will run from anywhere in the house to see it but she loves cuddles, she loves to hold your finger, she just looks at you and takes you in.
“At the moment we want to show Dot happiness and love, we don’t want her to be surrounded by family grieving or crying over her … she is here, she is with up, we know the girls (Elsie is six, Happie, three are going to have really sad days coming but we want them to be a normal family for as long as they can and to enjoy their baby sister.”
As part of a close-knit Adelaide Hills community at Lobethal, family and friends wasted no time rallying support, organising a team to walk in Sunday’s Bloody Long Walk, from Carrick Hill to Glenelg, to raise money to help find a cure.
Spearheaded by neighbour Mel Randall and the director of the local preschool, Lee Munn, Team Dot was formed with the goal of raising $1400 – incredibly, before anyone has taken to the first step on the 35km trek, more than $32,000 has been raised for #DoItForDot, the most of any South Australian team.
“As a community we were shattered by the news but keen to help … after lots of crying and feeling helpless we decided we wanted to be proactive – Dot’s mum and dad are always strong participants in helping others,” Mrs Munn said.
CLICK HERE TO DONATE