olivia is 11 years old and is living with a rare unknown genetic disorder, this is being put down to central hypo ventilation syndrome, a metabolic condition & mitochondrial disease, we have spent the last week in london trialling a shiley tracheostomy which sadly wasnt right for olivia and is currently on home leave but is due to go back to st thomas’ hospital on monday to snow leapoards ward to trial a new type of trachesotomy. if this does not work for her we are left with no other spare 6.5 cuffed bivona tracheostomys due to global shortage which only last 4 WEEKS. any funds raised will go towards finding & buying these tracheotomys travelling back and fourth from london to get clean clothes & also food & drink thank you for reading, any donations or shares are appreciated 💞