Emma is one of the 500+ kids waiting for Trikafta. She has had 6 admissions in the last 12 months and her family are pleading with the government to list Trikafta without delay.
Each hospital stay is especially difficult for Emma and her family as she lives 4.5 hours from the hospital. Taking her away from her friends, school and most of her family for weeks at a time.
She’s fighting two serious bacteria, pseudomonas and ABPA, leading to the hospital admissions, where treatment has involved several IV antibiotics and strong steroids. Her last admission was the trickiest, with no known cause for her decline. Unfortunately treating the chest infections has become increasingly more complex as her health has declined.
On top of this she has significant digestive issues with her weight being a constant struggle, in particular with the enzymes that are currently available. Emma now has a PEG inserted in her stomach to give her feeding support while she sleeps.
Emma’s mum Emily is desperate for her to be able to access Trikafta. ‘Every day of her life she has to take upwards of 15 tablets along with numerous inhaled medications and physiotherapy to try to keep her out of hospital. This needs to change and the sooner the better. Her lungs have already sustained irreversible damage. Please help everyone fighting CF to stop the damage and start enjoying life without the burden of treatments.’
@markbutlermp@vertexpharmaceuticals for the families waiting for access to Trikafta, every day matters. Please list without delay to give young kids like Emma the chance at a brighter future.
Leave a Reply