Lucy was born with a rare congenital condition called Goldenhar Syndrome. This condition effects approximately 1 in every 10,000 births.
In Lucy’s case her abnormalities include a small malformed lower jaw, malformed tongue, missing some cheekbone (left side) a small dermoid cyst in her left eye, bilateral skin tags (which were surgically removed at 16 months of age) and atresia/stenosis of her ear canals.
Her left ear has complete atresia (absence of ear canal and ear drum) and is essentially deaf, and her right ear has a severely stenosed canal (very narrow). Even though her right ear can potentially hear well, unfortunately due to wax buildup and persistent glue ear, her hearing is now only at 20-30% and she relies heavily on her bone conductor aid to hear.
As well as hearing difficulties her abnormalities mean that she has had issues with eating, speech and sleep apnoea.
Today members of the Mooloolaba Lions Club visited the Nambour to the Hear and Say Centre to watch (via video monitor) as Lucy undertook a regular hearing therapy session. This essential therapy does not come cheap for single mum Michelle. The cost of sponsorship for a child for one year is $10,000.
The Lions Club of Mooloolaba pledged $2,000 as a part sponsorship. Unbeknownst to the Hear and Say Centre principle Karen VonHomeyer, the Board of the Club recently made a decision to increase their sponsorship to $5,000.
Lucy will also require extensive work done to repair the hearing mechanisms internally. For this she will have to go to the United States as the surgery can not be done in Australia. The family will need to fund raise $80,000 for this treatment and are appealing for obtain local support.
You can find out more by visiting Lucy’s website or by visiting Lucy’s Facebook page.
Now watch a snippet of Lucy’s therapy session with Hear and Say Therapist Roxanne Innes and mum Michelle.
This is a great article Charles. Once again thank you from us all.
Lucy certainly stole our hearts and we are looking forward to monitoring her progress from here on.
To all the people at Hear and Say Nambour, you do a wonderful job wih these children and give them the chance to lead a normal life.
To Lucys Mum Michelle, it must be hard being a single Mum with two other children to look after but you handle it all so well and you are such a loving and dedicated Mum.
keep up the good work.
Moololaba Lions Club are very interested in Lucys progress and are proud to be involved.
Ernene & Fred Smedley