A very special holiday for the Chignells

Going on a holiday is considered fairly normal for most families over the summer break. However, it’s not as simple as it sounds for families who have a special needs child.

Parents Sarah and Stuart live in Bendigo with their five children; Eadweard, Morag, Arlen, Aengus and Annaliese; and it’s very rare that they go on a holiday with the whole family.

Their eldest son Eadweard is 9-years-old and suffers from an undiagnosable neurological condition. Because of his condition, Eadweard is non-verbal, is fed through a PEG tube, has uncontrollable seizures and requires assistance with all his daily needs.

Eadweard comes to stay at Very Special Kids Hospice where he receives 24 hour specialised nursing care, and it gives his parents much-needed respite.

Recently, the whole family came to stay at the onsite accommodation located just behind the Hospice; allowing them to be close to Eadweard during his stay, and they could also spend quality time together as a family.

“We found it really special that we could have all the kids together whilst Eadweard stayed in the hospice” said his mother, Sarah.

“It was a true family holiday because we weren’t constantly working around Eadweard’s medical needs, but instead the nurses did such an amazing job of caring for him and it meant Stuart and I could take a break and enjoy our family time together.

I also found it really nice to be an active participant in the family activities, rather than taking on the role of a carer.”

Sarah said another highlight of staying at the onsite family accommodation was that their other children could join in on all the hospice programs and activities with their older brother.

“We had an amazing art therapy session one of the days. It was really special to do an activity like that as a family, and the art therapist was so amazing at including everyone.”

Eadweard’s younger brother Aengus agreed, “I liked doing the art with Eadweard because we don’t normally do stuff like that together”

Thanks to Chain Reaction Challenge Foundation for funding the Very Special Kids family accommodation renovation and enabling more comfortable stays for families.

Find out more information on Very Special Kids onsite family accommodation here.