Even angels need help

When Emily was diagnosed at 4 years old with a genetic condition known as Angelman Syndrome, she and her family were still living in New Zealand. 

The syndrome presents symptoms such as intellectual disability, hyperactive behaviour, speech problems, feeding difficulties and epilepsy. 

But Emily also has a beautiful, happy disposition, which is present in most ‘angels’. 

After the family moved back to Brisbane shortly after Emily’s diagnosis, Michelle and her husband were soon 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 and require around the clock attention, which can be challenging for families, especially when there are other children.

“Angels don’t like to sleep, or rather not that they don’t like it, but that they don’t need it,” Michelle explains.

“Emily sleeps about five hours a night and it has been broken sleep for us for 21 years now.” 

Due to carers stress and repetitive strain, Michelle suffered two prolapsed discs that crushed her L5 nerve in her spine and created a drop foot. 

Michelle underwent emergency surgery to release the pressure, however, months later she still has no control over her left foot making 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,” she says.  

“I can’t lift more than 10kg anymore so I’ve had to re-evaluate.” 

As a single mother who is constantly exhausted, Michelle does the best that she can to be there for both of her daughters. 

Michelle explains that she often feels pulled in different directions by her two girls, 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,” she says.

“It’s taken Zoe’s childhood away and I think that’s what hurts me the most.”

Michelle is now getting the support that she and the girls need through Youngcare’s Grants which provides funding for support workers and respite, allowing her to do more things with her youngest daughter. 

“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.”

Through this support, Michelle is able to give both of her daughters the attention and time that they deserve, while creating happy memories that will last a lifetime. 

“It’s given me the best of both worlds,” she explains.

“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.”

If you, or someone you know, could benefit from a Youngcare Grant, please contact Youngcare Connect on 1800 844 727 or email [email protected]