KessiaCare Foundation is a small, not-for-profit organisation created in March 2003 by Denise and Geoff McConnell after their daughter Kessia died from a diffuse brainstem glioma, a highly aggressive form of brain cancer. Their personal journey, together with those of many other bereaved families, inspired the creation of this Foundation.

Denise and Geoff currently fund and manage the Foundation and are supported by a highly experienced and professional Board.

“Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care through death and bereavement.”

Association for Children with Life Threatening or Terminal Conditions and their Families and the Royal College of Paediatrics and Child Health. “A Guide to the Development of Children’s Palliative Care Services” London 1997.

It is this definition of paediatric palliative care that is embraced by KessiaCare Foundation—one that is holistic in its approach to caring for a dying child and supporting the family as a whole unit.

KessiaCare Foundation aims to help families caring for a child with a life-limiting condition during the stages of palliative care, end-of-life care, or during the first year of bereavement, to enhance quality of life for the family as a whole.

Our focus on helping families with kids in palliative care does not mean we live without hope or believe the inevitable outcome for a child living with a life-limiting condition is death.

However, while every effort, hope and prayer is for recovery, it is a tragic reality that some seriously ill children will not survive their illness. It is these kids and their families who we intend to help.

When the focus of treatment changes to one of paediatric palliative care, KessiaCare Foundation aims to support the primary goal of this treatment phase—to enhance quality of life for the child and provide support to the family as a whole.

Stories from many bereaved parents whose child received palliative care suggested a need for greater support for their dying child, their other children and for themselves in areas such as respite care, father and sibling support services, and bereavement support. Furthermore, families wanted services that understood the needs of the family as a whole.

Such anecdotal stories are now supported by evidence gathered in the first comprehensive review of paediatric palliative care services in Australia, commissioned by the Australian Government Department of Health and Ageing. The Paediatric Palliative Care Service Model Review Final Report 2004 describes information gathered from both service providers and carers. A summary of the report is also available.

KessiaCare Foundation seeks to meet some of these gaps by positioning itself as a “safety net” for families of children receiving palliative care and for families recently bereaved. (See How can we help?)

Ideally, children with life-limiting conditions and their families should have access to continuous care from diagnosis onwards. We recognise the narrow focus of our mission, however, we feel our limited resources are best placed towards supporting families during this critical period when help is needed the most.

There are numerous groups and services already doing an outstanding job supporting seriously ill children (eg. Ronald McDonald House Charities) and children in palliative care. Many are state-based (eg. Very Special Kids in Victoria, Bear Cottage in NSW) or illness-specific (eg. Leukaemia Foundation, CanTeen).

The Foundation aims to distinguish itself from other groups by:

Þ Helping families caring for children with any life-limiting condition;

Þ Helping families throughout Australia;

Þ Helping these families when their child is receiving paediatric palliative care or end-of-life care, or during the first year of bereavement.

The Foundation seeks to assist families of children aged 0 –18 years who are receiving paediatric palliative care or end-of life care.

The Foundation also seeks to assist families during the first year of bereavement.

The Foundation seeks to work in partnership with other agencies already meeting a variety of needs of families caring for children with life-limiting conditions. When families have additional costs or need for financial assistance, and have no other means of meeting such costs, KessiaCare Foundation seeks to provide a “safety net” to help.

There are several ways we seek to help families:

Þ The Foundation aims to contribute financially towards costs and services which enhance quality of life for families of children receiving palliative care or families recently bereaved. This may include costs such as additional childcare for siblings or emergency night nursing to allow parents to rest and reenergise.

We seek to provide financial assistance when there is no other avenue available to families, such as through government assistance or other funding bodies. This is what we refer to as our “safety net”.

Þ We aim to identify, advocate or create services which assist families of children receiving palliative care or for families recently bereaved if no service currently exists in a form which meets their needs.

As a small, relatively new organisation our activities are currently limited to:

Þ Managing Kessia’s Cottage—Ronald McDonald Beach House as part of Ocean Grove Beach House Inc;

Þ Participating in the Carers’ Reference Group for the Paediatric Palliative Care Resource Project currently being conducted by Palliative Care Australia;

Þ Contributing towards a bereavement package for families and carers currently being developed by Sydney Children’s Hospital;

Þ Submitting a request to the Australian Tax Office for deductible gift recipient status and income tax exempt charity status;

Þ Building a Public Fund to receive donations; and

Þ Developing funding submissions and grant applications to enable us to conduct the work of our Foundation. 

As a new organisation we are fortunate to have realised some significant achievements, including:

Þ The establishment of Kessia’s Cottage in Ocean Grove, Victoria in September 2003. Kessia’s Cottage provides respite for families of seriously ill children and families recently bereaved. The Foundation secured the support of groups such as Very Special Kids and Palliative Care Victoria whose support allows families to holiday with the knowledge that local nursing assistance is available if necessary.

The Foundation raised over $25,000 of donations-in-kind to help outfit the cottage and gained the support of over twenty local businesses which provide substantial discounts to families staying at the cottage (such as free entry to mini-golf, free tours of museums and lighthouses, and free meals at restaurants).

Þ Partnering with Ronald McDonald House Charities, one of Australia’s leading charities which supports seriously ill children and their families, to ensure the long-term viability of Kessia’s Cottage through a large capital funding grant of $350,000 in June 2004.

The cottage is now known as Kessia’s Cottage—Ronald McDonald Beach House. KessiaCare Foundation continues to play a major role in the management of the cottage and assists Ocean Grove Beach House Inc. in fundraising to cover recurrent costs, allowing families to stay free of charge.

Þ Influencing Ronald McDonald House Charities (RMHC) to extend their Ronald McDonald Beach House program to include bereaved families. Kessia’s Cottage is the second Ronald McDonald Beach House in Australia with another three currently being developed. These and future beach houses will be available to bereaved families to provide a peaceful place for respite and healing.