A VICTORIA Point mum will celebrate Mother's Day this year as the new face of a fundraising appeal for young people with high care needs.
Single mother-of-two Michelle Beith is the new face of the recently-launched 2019 Youngcare Appeal, which raises money to support families caring for young people with high care needs, and could go towards things such as respite and support workers.
Ms Beith's daughter Emily, 21, was diagnosed with Angelman Syndrome when she was four years old.
Symptoms of the rare genetic condition include intellectual disability, balance and movement problems, hyperactive behaviour, speech problems, feeding difficulties and epilepsy, meaning that Emily requires round-the-clock care.
Four years after Emily's diagnosis, Ms Beith's second daughter Zoe was born.
Ms Beith said she said she often found it difficult to be equally present for both daughters.
"Having that quality one on one time with Zoe is really hard," she said.
"(We) could be having a conversation or doing homework or something and then it's 'just a minute', it's always 'just a minute' to Zoe.
"She's used to it but it's hard, it impacts every moment of every day.
"It's taken Zoe's childhood away and I think that's what hurts me the most."
Ms Beith said extra support from carers and respite centres allowed her to take care of herself and Zoe.
Repetitive strain and stress caused two prolapsed discs in Ms Beith's back, leaving her unable to lift more than 10 kilograms.
The injury had been life-changing and she had been forced to change the way she cared for Emily.
She said it was often tough for people to understand what being a full-time carer was like.
"The community or people not living with people with disabilities really take for granted the ability to...be flexible and make last minute decisions and have freedom to do what they want," she said.
"Having someone with a disability, you are tied to their abilities. That encompasses your world ... in ways that others have no idea about."
Ms Beith said her Youngcare grant had helped the family to live as normally as possible and do the things they enjoy.
Emily has a real zest for life, and a love for horse-riding and musicals while Zoe, now 13, is gifted academically, athletically and musically.
"To have the support that the grants enable, it allows us to do as much normal living as possible," Ms Beith said.
For more information about Youngcare visit youngcare.com.au.
