For families affected by Niemann-Pick diseases
Niemann-Pick disease refers to a group of rare, inherited metabolic conditions, which cause a build up of toxic materials in the body. There is no specific treatment or cure for either one of the three recognised forms of Niemann-Pick disease (Types A, B or C).
The scale of issues facing families affected by the disease is enormous. Children with Type A will usually die before they are three years old. Children with Type B may live until early adulthood and be able to lead a fuller life, but experience many health issues. Children with Type C begin to develop profound problems between 4 to 10 years old, such as loss of mobility and intellectual ability, seizures, and dementia.
Families often reach crisis point before they receive emotional and mental health support. Early intervention will help to avoid this from happening, reducing feelings of isolation and despair and helping families to cope better in general.
This is why Roald Dahl's Marvellous Children's Charity is working in partnership with Niemann-Pick Disease Group UK to provide emotional support for siblings and parents.
The charity will run a series of workshops for 40 siblings of children with Niemann-Pick disease (aged between 3 and 19 years). They will also run one to one sesssions for parents and siblings, to help them develop their communication skills and express how they feel. These sesssions will also help to prepare families for the future care of their child, including end of life care and bereavement support.
The charity will then go on to develop new resources (including online and interactive resources) to be used to help more families affected by Niemann-Pick disease.