What does the SNUG program offer families?

The opportunity to bring families caring for a child with a rare condition together, in a place where the dignity and identity of each individual can be respected and protected.

• Accommodation and meals for the whole family during their stay at Myuna Bay Sport and Recreation Centre.
• Access to recreational facilities at Myuna Bay Recreation Centre for the whole family.
• Assistance to arrange and attend medical appointments which are identified by family and medical carers as desirable.
• Support for each activity from a team of trained volunteers during the families’ stay at Myuna Bay Sport and Recreation Centre.
• Recognition, encouragement and support of the parents’ strengths and emotional well-being, for the ultimate benefit of their own children.
• The opportunity for families to widen their network of relationships amongst people facing similar challenges.
• Encouragement to effectively use the support and services available within the families’ own community.
• Activities for families to get to know each other so that enduring support networks can be formed.
• A range of fun activities suitable for children with special needs and their siblings.
• Information to improve knowledge of, access to, and use of disability services.

Who can access the SNUG program?

Any family who is...

• Caring for a child or children with a rare health condition
• Experiencing a lack of supportive personal social networks
• Experiencing difficulty accessing medical, dental or allied health resources and services
• Having difficulty accessing or coordinating family holidays

How can families be a part of the SNUG program?

Families themselves, as well as GPs and other health/community workers, can make a referral to attend a SNUG camp. Families can obtain a referral or give permission for the referral to be made on their behalf. The coordinator of the SNUG program will then contact the family and conduct a phone interview to gather further information and the family will then be placed on an eligibility list until the appropriate camp becomes available.

Feedback from families who attended camp

Camp Feedback

Sarah (Parent):  The camp gave me time to grieve and breathe and to find strength.

Beth (Parent):  There’s a couple of families here that we’ve made a bit of a connection with…
Gavin: (Parent): So in some ways we speak the same language.
Neil  (Parent): … With the camp, at least you come here, just a change of scenery, change of attitude, change of people, you’re mixing with other people with the same problems you have and it just broadens your mind and makes you realise that you’re not the only one out there who’s struggling…

Rosie (sibling): Just being out here and being able to do all this stuff. That has been so good. ‘Cos not many of us have actually been able to go on these sorts of holidays. Because most of our money has been spent on our brothers and sisters, like their chairs and operations and everything. So this is like a dream come true for us. We’ve never been on such a holiday. Hardly ever been on a holiday. (11 year old)

Spending Time with Family

Sarah (Parent): I’ve been travelling with Tray to Sydney, leaving the girls behind, which was causing a bit of a rift in the family, because the girls think me and Tray are  going to Sydney, we’re having fun. What they don’t realise is we’re sitting in a hospital for hours and didn’t want to take them out of school. So we really needed to bring us all back together and bond a little bit.
Graeme (evaluator): Do you think that’s happening?
Sarah (Parent): It’s happened, yeah. We have cuddles again…. I’ve been able to sit back with the volunteers that are here, I’m able to sit back and watch my children do their activities. And a couple of times I’ve got teary-eyed because you’re viewing your children from a distance, to see a lot more - I mean, you’re out of the circle, so you get to see from the outside in and just how beautiful they really are and that its worth the hard job that you do.

Feedback about Volunteers

Jay (Parent):  And the volunteers are absolutely special. I don’t know what they do to these girls, but they must give them some sort of pills, like Prozac, when they come on, because they are wonderful. Everything was easy for them. They were really, really nice people.

Medical Appointments

Renee (Parent): And having the opportunity to send us off and see the dentist and including the siblings, and doctors appointments. Everything wasn’t a hassle, and you had someone to take away the hassle of getting lost.

Camp Follow- up Feedback

Sue (Parent): when we are having a bad day the photos (of camp) remind us of good memories.

Anonymous It has been a long journey but because of camp I have the strength to cope.