Supporting Families Throughout Victoria

Shepparton Annual Report 2010 – 11 Supporting families throughout Victoria Ballarat Brunswick Malvern Traralgon Torquay Rosebud Purpose, Vision and Values Contents Our Services House Volunteer Team Award 9 Improving the quality of life for families Family Services 11 of children with life-threatening illnesses Family Support Team 12 A Very Special Birthday 14 Very Special Kids House 16 Who We Are? Welcome to Very Special Kids 3 Supporting Regional Families – The Holmes Family 4 Overview Chairman and CEO’s Report 6 Supporting A Snapshot 2002–2011 18 Our Services Piggy Bank Appeal 20 External Events 24 Our Corporate Partners 25 Very Special Supporters and Donors 26 Fundraising Team 27 ‘Friends’ of Very Special Kids 29 OAM Award 29 Very Special Kids Board 30 Corporate Governance 32 Our Staff 34 Our Volunteers 35 Our Donors 36 Report of Directors 39 Concise Financial Report 41 Future Directions – Our Strategic Plan 47 Our purpose: Very Special Kids supports Our vision: All families of children with You Can Help 48 families throughout their experience of caring life-threatening illnesses are able to access for children with life-threatening illnesses, quality services that meet their needs. Where You Can Find Us 49 from diagnosis through to recovery or bereavement. Our values: The Board, staff and volunteers of Very Special Kids value: Very Special Kids provides a range of physical, emotional, social and spiritual support, which • Respect: by recognising the individual, is offered: welcoming diversity and nurturing choice • Collaboration: by building connections, • holistically strengthening relationships and partnering • centred on the family • Community: by creating supportive Very Special Kids is a not-for-proit company limited • to all Victorian families of children relationships and a sense of belonging by guarantee and is accredited by The Australian with life-threatening illnesses • Compassion: by being welcoming and showing Council on Healthcare Standards. • across a range of settings, including warmth, hope and empathy the hospital, hospice and home Very Special Kids is endorsed as a deductible gift • Learning: by enhancing and sharing recipient under Subdivision 30-BA of the Income • by specialist staff and trained volunteers our skills, experiences, knowledge Tax Assessment Act 1997 (all donations of $2 or more • with the engagement of the community and wisdom are tax deductible) and is endorsed as an income tax exempt charitable entity under Subdivision 50-B of • Integrity: by acting ethically, honestly, the Income Tax Assessment Act 1997. fairly and with accountability Welcome to Very Special Kids 2011 is the 15th birthday of Very Special Kids House, Victoria’s only children’s hospice. A place where families caring for a child with a life-threatening condition can access out-of-home respite and end-of-life care. Very Special Kids was established in 1985 At the time Margaret said ... by two families who met while their children were in hospital and dying from leukaemia. Today, Very Special Kids supports more “ The building as such, is only bricks than 800 families across Victoria. and mortar but Very Special Kids With more than 50 staff and nearly 400 House is more, much more. volunteers, Very Special Kids supports families It is a home in the true sense of from the time their child is diagnosed through the word. It has a soul, a heart, to recovery or bereavement. Families can access a range of unique services, including a spirit. It emanates love and counselling and emotional support, trained care and if one listens with the family support volunteers, a sibling support heart, lots of laughter and some program, a bereavement program, family tears will be heard bubbling and parent activities and planned and emergency respite and end-of-life care under the surface.” at Very Special Kids House. How true those words have been for the staff and volunteers who have worked at the House Services are available to families free-of- and for the many families who have been able charge from our ofices in Malvern, Brunswick, to access the House for out-of-home respite Rosebud, Ballarat, Shepparton, Torquay and end-of-life care for their children over and Traralgon. the past 15 years. This year has given us the opportunity to On relection, none of what Very Special relect on the extraordinary vision and effort Kids has been able to achieve would have of Sr. Margaret Noone, who was Director of been possible without our highly qualiied Very Special Kids and the driving force behind and dedicated staff and the commitment of bringing the House into being, as Australia’s our wonderful volunteers. Nor would it have irst hospice for children. been possible without the generosity of the community in which we live and the support of the Victorian Government which provided a signiicant one-off grant in 2010-11 and has committed to providing additional recurrent funding for the House going forward. Patron, Sister Margaret Noone with Kirneisha Very Special Kids - Annual Report 2010 – 11 3 “ All the trips to Melbourne and The Holmes Family extended stays with Henry Supporting the needs of regional families have been hard especially being separated from my family.” Jess Holmes, mother of Henry Shepparton family Jess, Paul, Gretel (7), I remember holding him in my arms and looking Jenni has been involved with the family Billy (6) and Henry (4) Holmes understand down at him and thinking he’s vision impaired since June 2009, “The family has courageously the particular stresses and strains experienced and now he won’t be able to walk or talk.” faced many challenges throughout Henry’s by regional families who have a child with life and are always positive and engaging. Jess and Paul felt devastated when Henry was a life-threatening illness and the impact of It is a privilege and a joy to support the irst diagnosed, “We were shattered. When frequent visits to hospital in Melbourne on family and reminds me of why I love you go from that ‘perfectly healthy child world’ the whole family. Four year old Henry has working with families at Very Special Kids.” we had with Gretel and Billy, where it just all cerebral palsy, epilepsy, severe respiratory unfolds in front of you and then when that Thirty ive families are currently supported issues, is fed through a tube in his stomach doesn’t happen it’s really hard. Especially in the Hume region and just as the families’ and is visually impaired. Henry has been the fact that I’ve never had eye contact needs are diverse, so are the services offered. critically ill on numerous occasions throughout with Henry,” Jess said. Many families are geographically isolated and his young life, resulting in him needing to be really value support provided to them locally. lown from Goulburn Valley Health to The Royal Two years ago a friend of the Holmes family Children’s Hospital (RCH) in Melbourne on six suggested they get in contact with Very Special The family also have a trained family support separate occasions for a stay of at least three Kids. Jess explains, “When Jenni our Family volunteer from Very Special Kids who looks weeks. These extended stays place a great Support Worker irst came around we couldn’t after Henry for a couple of hours every week, deal of pressure on both Jess and Paul. believe it when she told us all the services that giving Jess the opportunity to take Gretel and With Jess away from the rest of her family, were available. There was a level of excitement Billy to their swimming lesson. Henry also Paul has to take on the role of ‘Mr Mum’ that there was actually a service out there that had his irst stay at Very Special Kids House and at the same time maintain the family was for the whole family.” 12 months ago, while the rest of the family business. The last time Henry needed to be stayed in the Parent Accommodation. Paul The family says Jenni has been fantastic. airlifted to Melbourne, which was May 2011, said, “We couldn’t get over how wonderful “She’ll often call just to see how we are he wasn’t expected to survive. the facility is. It’s great to know that facility and they’re always running really great events is there because of Henry’s high care needs, The family irst discovered Henry’s condition that we can get involved in to have a day out. his local carer or the House are our only when he was 13 weeks old. Jess recalls when There have been a few that we’ve missed due options for a break.” they learnt the full extent of his condition. to Henry being unwell but it’s just wonderful “When they did the general check up on to know that these events are being thought Paul and Jess both agree the support discharge from hospital when Henry was of and offered to families,” Jess said. from Very Special Kids has made a big eight days old they found out about his difference to their family. cataracts. We took him to the RCH in “ He charms all the nurses Melbourne and were told he had severe “ They’re angels. We’re always telling cataracts and that they would remove his at the hospital. Anyone who people about Very Special Kids. lenses and he would be permanently vision meets him gains so much.” They don’t just look after Henry aided. We thought him having issues with his Jess Holmes, mother of Henry vision was enough to deal with but then over they cater for the whole family.” time I noticed the soft spot on top of his head Paul and Jess Holmes, Henry’s parents was bulging.

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