Canavan is a progressive neurological genetic disorder caused by the absence of aspartoacylase (ASPA), a vital enzyme. ASPA breaks N-acetylaspartate acid (NAA) into building blocks essential for building myelin (“white matter”), a fatty membrane that forms a proactive coating around the nerves to ensure that they function properly.
Canavan is one of over 50 genetically inherited disorders known as Leukodystrophies Diseases. There is currently no treatment for Canavan and it is life-limiting.
For more information, visit the National Tay-Sachs and Allied Diseases Association website.
How Palliative Care Can Help
Pediatric palliative care is all of the specialized care not directed at treating the disease itself. Depending on the patient, it might include consultations with a child life specialist, social worker, nurse and/or nurse practitioner, music therapist, massage therapist, occupational therapist, etc. In short, palliative care is designed to provide relief from the symptoms, pain, and psychological and emotional stress of serious illness-whatever the diagnosis. IThe goals iare to promote quality of life for the child, and to ensure that families are active in the child’s treatment, so that medical decisions are patient- and family-focused.
Palliative care is often confused with hospice and end-of-life care. It is intended for children and families living with a life-threatening or terminal condition, but pediatric palliative care is NOT hospice. In fact, palliative care is appropriate for any stage of the illness and can be delivered along with disease directed curative treatments.
Palliative care providers recommend that treatment begin as early as possible in the illness journey. Integrative care that includes palliative medicine can begin at diagnosis.
Ask your pediatrician to recommend a palliative care provider. You may also visit the Center to Advance Palliative Care (CAPC) website, which includes a directory of palliative care providers and hospitals by state.