We invited one of the world’s outstanding thinkers, Professor Stephen Hawking CH, CBE, FRS, to be our Patron, and he willingly accepted. Professor Hawking continues to be our Patron, and he is on record as saying: “Whilst many children are kept in hospital initially, it is the families who care for sufferers at home that find their lives, home and life plans all having to be reassessed. it is at this time you need to be able to make contact with families in similar circumstances to gain support, and knowledge of how to handle situations.”Click play to hear a personal message from our patron Professor Stephen Hawking.
Breathe On UK has published two booklets for parents and families with young people on LTV: the first provides information on the initial period of hospitalization; the second provides guidance in managing the unique challenges involved in caring for a young person on LTV after they leave hospital.
Click here to access the Downloads page.
To date Breathe On UK has:
- Established a respite agreement in collaboration with the Association of Children's Hospices
- Been responsible for a bespoke oxygen delivery mask in conjunction with Respironics (Philips UK) which is now available off the shelf
- Worked together with Contact A Family - Legislation has now been passed to enable The Blue Badge to be given to families of LTV & Technology dependent young children under the age of two years.
- Provided Family liaison support in the South West
- Helped to re-create the statistics on families and children using tracheotomies
