December, 2019 | Very Special Kids

With the rebuild of the hospice due to start in December 2020, we have been trialling an in-home care pilot which has been met with a positive reaction from the families involved.

Fifteen families are currently part of the program pilot, which will be formally evaluated by an external company and the information gained will be used to assess whether providing in-home care will part of an alternative service during the hospice closure.

The feedback, so far, from families has been extremely positive. The key benefits have been very consistent in that it gave parents or guardians a break and some time for themselves knowing their child was well cared for. They also spoke about feeling confident as staff were very interested in their child and they appreciated their child had the opportunity to have one-to-one care, and entertainment, which is not always possible on a day-to-day basis.

Staff have also said they are able to get to know the child and family very well, which will improve their understanding for future hospice visits and that being able to really engage with the child in a more relaxed environment is a huge benefit.

NB: Due to funding, we were limited to having 15 families participate in the pilot program. Family selection has been very challenging as so many families require help. There are also strict criteria we need to meet for the pilot program which required us to select children and families based on the following criteria; A range of complexity of needs, from a range of cultural backgrounds, from inner and outer metropolitan Melbourne and equal numbers of male and female children, and are not receiving other NDIS or minimal in-home care support.

We look forward to sharing more about the in-home care program with you once the evaluation and recommendations are complete next year.

Like many couples, Katy and her husband Maurice were so excited to start their family.

So, in December 2014 when they found out they were not only pregnant, but pregnant with twins, they were over the moon.

Katy went on to have a normal and healthy pregnancy, and in August 2015 gave birth to two beautiful boys Damien and Dominic.

She described the first six months of being a new mum as blur of sleepless nights, a steep learning curve but fell more and more in love everyday with her babies.

But before the boys turned one, Katy and Maurice were given the news no parent hopes to hear – not once, but twice.

The twins were both diagnosed with the same rare genetic life-threatening condition, SMA1 – Spinal Muscular Atrophy. This illness will ultimately cause their tiny bodies to deteriorate to the point where they cannot walk, sit-up or breathe on their own.

Katy and Maurice have recently moved to Australia in the hope of giving their boys the best chance at life, they left behind extended family and the comforts of place they had always called home. In an unknown country, facing an unknown future, Katy shared how grateful she was for Very Special Kids.

She says;
“I didn’t know a place like Very Special Kids existed until I needed to. Very Special Kids is our Australian family, there is nobody else I can trust to care for my children the same way I would. The staff understand their needs not just medically but also emotionally. I know in the hospice our boys have the chance to live their life to the fullest. Their bodies will grow but they will never be able to walk on their own, I worry I won’t be able to lift them and take them places, but at Very Special Kids they are able to experience so much in the time we have left. I am so grateful for the smiles they bring to the boys and the support they give our whole family. When no one else seemed to have the answers, the team at Very Special Kids are always there to help guide us.”

Every dollar donated to Very Special Kids helps families in need, for families like Katy’s it gives double the love and double the hope.

Please give generously here.

Monthly Archives: December 2019

In-home care program being trialled

Meet the Vy family