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FOR eight years, Shirley McKernan’s daughter has battled with an undiagnosed life-threatening disease.
To give back to the organisation that has helped her family, Ms McKernan is sharing Matilda’s story.
Ms McKernan is a single mum with three daughters living at home.
Her love for her special princess has seen them through some tough times.
“She’s an amazing little girl and has really taught me what to appreciate in life,” Ms McKernan said.
This month she wants to thank the Very Special Kids program which has helped the family for the past eight years from its Piggy Bank Appeal.
Matilda was black and blue when she was born and was taken straight to Melbourne for the first six months of her life.
She has a tracheostomy which is a tube in her throat to assist her breathing and hypertomia or low muscle tone.
Sleep apnoea is just one of the host of other health issues she faces.
She takes several medications including antibiotics and epilepsy medication.
Ms McKernan said even though doctors can’t find out what is wrong with Matilda, her symptoms are so severe they are life-threatening.
“They have done every test possible and have sent results to the US and UK — she has been put in The American Medical Journal to try and diagnose her.”
“There are a couple of children in the world with similar symptoms, but she is the only one with her condition.”
So rare is her condition that it is referred to as Matilda’s syndrome, for want of an official medical name.
The Piggy Bank Appeal runs in Victoria in September and aims to raise $1 million to help families of those with illnesses like Matilda’s.
Ms McKernan said she can’t stress the importance of the foundation enough.
“When Matilda needed wheelchair modifications the program found where I could go about getting that,” Ms McKernan said.
“I can call them whenever I need support — it’s just a beautiful foundation.
“There are a lot of families in this region who need their help, so if the community can get behind the cause and help it would be amazing.”
Piggy banks have been set up in all Commonwealth Bank branches and anyone who wants to donate should visit piggybankappeal.vsk.org.au.