Emma McKee is the face of this year’s Piggy Bank Appeal which officially kicks off on Friday, and she and her family represent more than 900 families across Victoria who are supported by Very Special Kids.
Ten-year-old Emma is a very cheeky girl who loves swimming, giving cuddles and playing on the swings, but she also requires 24 hour care and assistance for all her basic needs.
Emma had her first seizure at only seven weeks of age and was later diagnosed with Lennox-Gastaut Syndrome, a rare type of uncontrolled epilepsy.
Emma unfortunately never reached any usual milestones growing up, and has suffered major developmental delays due to her condition. She is non-verbal, is fed through a tube and can have up to 40 different types of seizures per day.
Emma’s mum Jenny has become her full-time carer and father Rodney and 14-year-old brother Jarrod do all they can to help.
“Every time she has a seizure it’s doing so much damage to her, but no one can tell us how she feels or what it’s really doing to her” explains her mother Jenny.
Although Emma is fairly unresponsive, she has unique ways of getting her point across.
Jenny says that whenever she doesn’t like anything she is extremely communicative and will often cry, luckily for her family, Emma never cries when she comes to stay at the Very Special Kids hospice.
“It’s a home environment, and completely different to a hospital. The staff there take a lot of notes and ensure they do everything the way that she’s used to having it done, it’s been great, and such a relief” says Jenny.
Although no one can tell Emma’s family what is in store for her future, and the prognosis for Lennox Gastaut Syndrome is disheartening, her family is thankful for every day they have with their beautiful little girl.
Very Special Kids will continue to support Emma McKee, as well as her family. To help us do that please text ‘PIGGY’ to 0455 021 021 to donate to the Piggy Bank Appeal. Or you can donate online.