JJ was diagnosed with cerebral Adrenoleukodystrophy (ALD), a progressive and life limiting neurological condition. After being a happy and healthy boy, JJ was diagnosed with this condition at just 6 and half years old.

ALD is rare genetic disorder that mainly affects the white matter of the central nervous system (ie the brain or spinal cord) which results in healthy boys to loose their abilities to walk, talk, speak, hearing, eye sight etc.

JJ went from a healthy boy to loosing all his abilities and become under pallative care.

Demelza children’s hospice supported JJ and his family through this difficult time where they offered respite.

JJ spent many nights/ short stays with demelza over the 6 years which he loved and the family are very grateful for.

Demelza support families like JJ’s to navigate through these difficult times.

Unfortunately JJ passed away in March 2023

Thank you for reading and supporting me. It is much appreciated.

About Demelza:

Demelza delivers extraordinary care to extraordinary children who are facing serious or life-limiting conditions, throughout Kent, South East London and East Sussex. Were here for them and their families with expert clinical, emotional and practical support at every step from first diagnosis and for as long as were needed.

When they need us most, well be there; to reassure, to guide and to care. By their side when they feel isolated, helping to create joy in family life during challenging times and making precious memories.

Demelza believes in care that doesn't back down.