Dominic and Damien's story

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"When no one else seemed to have the answers, the team at Very Special Kids are always there to help guide us.”

- Katy, mum to twins Dominic and Damien

Like many couples, Katy and 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. Before their first birthday, Katy and Maurice were given the news no parent hopes to hear. 

The twins were both diagnosed with the same rare genetic life-limiting 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 moved to Australia in the hope of giving their boys the best chance at life, they left behind extended family and the comforts of a 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 shares, “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.” 

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