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Emily's Story

Even angels need help sometimes

Emily was medically diagnosed with Angelman Syndrome at four and a half years of age.

Angelman Syndrome is a genetic condition with symptoms such as intellectual disability, hyperactive behaviour, speech problems, feeding difficulties and epilepsy. Emily also has a beautiful, happy disposition.

“Angels don’t like to sleep, or rather not that they don’t like it, but that they don’t need it. Emily sleeps about 5 hours a night and it has been broken sleep for us for 21 years now.” Michelle

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Michelle looking worriedly at Emily, who is smiling and standing at her modified bedroom door

All ‘angels’ require around the clock attention, which can be challenging for families, especially other children. As a single mother who is constantly exhausted Michelle does her absolute best to balance the needs of both of her daughters, but it can become extremely difficult at times.

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“Having that quality one on one time with Zoe is really hard.”

Due to carers stress and repetitive strain, Michelle suffered two prolapsed discs that crushed her L5 nerve, creating a drop foot. This makes caring for Emily full time even more difficult.

“That injury has been life-changing.” Michelle

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Michelle, Emily's support worker, Emily in her modified quad bike, and sister Zoe walking near the waterfront

Michelle is now getting the support that she and the girls need through Youngcare’s grants which provided funding for support workers and respite.

“I applied for the At Home Care Grant to fill the voids that we had in our lives. It’s given me the best of both worlds.”

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To the people who have helped to make the grants possible, Michelle wants to say thank you.

“To have the support that the grants enable,allows us to do as much normal living as possible. It’s just so invaluable. Not just financially, but for what it does for us mentally as well.” Michelle

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