Raising funds and awareness for young people with high care needs
Every young person, regardless of their care needs, should have the freedom to choose where they live, who they live with and how they live their lives.
Youngcare is a non-for-profit organisation creating choice and independence for young people aged between 18 and 65 with high care needs. They provide fully accessible and age-appropriate living spaces, grants for equipment and home modifications and support through a national phone line.
By supporting Youngcare, you’re not just supporting young people with high care needs, but you are also supporting their family. To hear about the difference that you can make by joining with Merlo on May 10, take a moment to read Emily and Michelle’s story below.
Emily was medically diagnosed with Angelman Syndrome at four and a half years of age while her family were living in New Zealand. Angelman Syndrome is a genetic condition present at birth with symptoms such as intellectual disability, hyperactive behaviour, speech problems, feeding difficulties and epilepsy. Emily also has a beautiful, happy disposition, which is present in most ‘angels’.
“Sadly they always tell you the negatives rather than what their abilities can be which is just gut-wrenching.” Michelle, Emily’s Mum
Four years after Emily’s diagnosis, Michelle and her husband decided to move back to Brisbane to be closer to family for support. Despite the chances of having another ‘angel’, Michelle and her husband wanted to start considering having another baby. They decided to undergo testing to ensure that they were not carriers of the gene that causes Angelman Syndrome and also test the mutation present in Emily’s genes to ensure that their chances of having another ‘angel’ were low.
“The thing with Angelman Syndrome, back then there wasn’t pre-pregnancy screening in New Zealand like there is with Down Syndrome. We had no medical pre-requisites, no family history and the chance of having a different form of mutation is pretty low so we decided to move forward.” Michelle
Years later, Michelle and her husband were blessed with another gorgeous baby girl. Now that Emily’s sister Zoe is older, life is always a little bit crazy for Michelle and her girls. ‘Angels’ experience high levels of sleep aversion, which proves to be quite disruptive for Emily and Michelle.
“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
As a single mother who is constantly exhausted, Michelle does the best that she can to be there for both of her daughters. Zoe, who is 13, is incredibly gifted academically, athletically and musically and Emily who is now 21 has a real zest for life, she loves horse riding and musicals. She doesn’t like sitting still, and always likes to be out.
During the day while Zoe is at school, Emily is picked up to do community based learning programs. This helps with her independence and keeps her entertained throughout the day. It also allows Michelle to work and keep the family afloat.
All ‘angels’ require around the clock attention, which can be challenging for families, especially other children. Michelle does her absolute best to balance the needs of both of her daughters, but it can become extremely difficult at times.
“Zoe and I 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. You know, she’s used to it but it’s hard, it impacts every moment of every day.” Michelle
Michelle explains that oftentimes she feels pulled in different directions by her two girls. As a single mother, she is caught between caring for Emily and ensuring that Zoe does not miss out on the opportunities available to her.
“Having that quality one on one time with Zoe is really hard. It’s taken Zoe’s childhood away and I think that’s what hurts me the most. That’s where Youngcare funding has come into it; it allows me to do more things with Zoe.” Michelle
Due to carers stress and repetitive strain, Michelle suffered two prolapsed discs that crushed her L5 nerve, creating a drop foot. After emergency surgery to release the pressure, months later Michelle still has no control over her left foot. This makes caring for Emily full time even more difficult.
“That injury has been life-changing on top of having Emily and being a single mum anyway. I can’t lift more than 10kgs anymore so I’ve had to re-evaluate” Michelle
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 and try to create a happy medium between my girls.”
“It’s given me the best of both worlds. It’s the balance between inclusions as a family, so to have a support worker come with me and Emily and Zoe and do things as a family unit and it’s also given me the freedom to do things exclusively with Zoe, it’s enabled me to have someone with Emily. It’s grown the bond between Zoe and I and also between Emily and Zoe as well, because she doesn’t always have her sister under her nose.” Michelle
Through the provision of this funding, Michelle is able to give both of her beautiful daughters the attention and time that they deserve, while creating happy memories that will last a life time. To the people who have helped to make the grants possible, Michelle wants to say thank you.
“The community or people not living with people with disabilities really take for granted the ability to be able to be flexible and make last minute decisions and have freedom to do what they want. Whereas having someone with a disability, you are tied to their abilities. That encompasses your world and restricts your world in ways that others have no idea about. So to have the support that the grants enable, it 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
Visit the Youngcare website for more information on the important work that they do or to make a donation.