On the 14th of June 2016, Share a Star was given the amazing opportunity to go to The Houses of Parliament to speak with local MP Kelly Tolhurst, about the charity and severe M.E. (Myalgic Encephomyelitis). Jessica had been invited having won a Points of Light award and raising the issue of needed additional funding for paediatric brain tumours. This subject is very close to Share a Star, owing to the huge numbers of our Stars who suffer with brain tumours or have sadly passed away as a result.
We were able to discuss the function of Share a Star and how we could increase our support of these inspirational, seriously unwell young people and their families.
Kelly was amazed with the work that we do, especially as most of it is achieved from ‘The World of One Room’! She expressed her interest in getting involved and supporting Share a Star, in order to enable us to continue and increase the help that we can offer to the seriously unwell children and their whole families.
The campaign #MillionsMissing, referring to the millions of people who are missing from everyday life and the workplace due to severe M.E., was also raised. The impact of all types of M.E. on a person were discussed and Kelly agreed that the condition needed more recognition, understanding and funding.
A Background on Share a Star
Share a Star is a registered charity (charity number 1157517) that aims to recognise seriously unwell young people and their families as the special stars that they are. We are unique in that we provide support for the entire families, including the siblings, who are often forgotten. The support that we provide takes several different forms: from creating a unique ‘Holding Star’ for each unwell youngster, sending out ‘Happy Boxes’ full of surprises to bring a smile to giving special trips to the families through our latest venture Oakley’s Outings. If a Star does unfortunately pass away, Share a Star has a bereavement support project called ‘Forever a Star’.
The charity was founded by Jessica Taylor, whilst being desperately unwell in hospital with severe M.E. and subsequent osteoporosis. She continues to run the charity from her bed in her ‘World of One Room’.