The Lily Calvert Foundation was established in memory of our baby Lily Sujata Calvert, who died just 10 and a half months old, of an incurable brain condition known as Miller Dieker Syndrome. Click here for more information about Lily’s diagnosis and life.
During her time on earth, Lily and her family received support from paediatric palliative care providers including access to music therapy which brought a unique joy to Lily and her family. The aim of LCF is to raise awareness around the importance of paediatric palliative care, and to support those who provide care in this area including through music therapy.
Why palliative care?
Despite major advances in our capacity to prevent and cure serious conditions of infancy and childhood, there remains a group of children for which cure is not possible. Often thought of as a service for the elderly, palliative care also provides for children. It 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.
Music therapy was a program included in Lily’s palliative care that brought particular joy and happiness during a very difficult time. We support programs that aim to share that joy in music including
- Our flagship national program the LCF Music Therapy Kits aim to spark that joy in other families. Read our blog for more.
- Our LCF Musical Care program, developed in consultation with Very Special Kids Hospice in Malvern, Victoria to train health care professionals, carers and volunteers to support the use of music therapy in palliative care settings for children. More here
The LCF aims to support palliative care including through supporting
- Access and awareness of music therapy programs and instruments, and awareness and training of the benefit of music therapy in paediatric palliative settings,
- LCF seeks to raise awareness that Paediatric palliative care is about more than dying. It can include ongoing support for years and that it is about helping families make the very most of the time that they have.
- LCF runs on a grant basis and runs its own programs. We raise money and using specific criteria determine which organisation and resources will be allocated with the fundamental aim to support children with terminal illnesses.
- We aim to grant funds raised locally to local institutions or organisations working in the space where practicable.
- We prioritise organisations that offer flexible arrangements including assisting in-home care should that be a family’s preference.
- We also seek to raise awareness around grief and child loss, to break down taboos and encourage conversations.