As a hearing takes place in Parliament to discuss the possible purchase of Vertex, a life-saving drug for cystic fibrosis sufferers, Rachael Young, whose 10-year-old son Ethan has the condition, argues it can’t come soon enough…
“Cystic Fibrosis isn’t just an illness” says 48-year-old Rachael Young, whose 10-year-old son Ethan lives with this debilitating genetic disorder. “It is a condition which eats into every aspect of family life. There is no cure, no escape. Even with medication, you still have a sick child. What I want, and hope for every day – and for my daughter Emily too – is for our lives to be just a little bit easier.”
Rachael lives in Norwich with Ethan and his older sister Emily, 13. She works two days a week for a local food and drink magazine; a distraction from the exhaustion and worry of caring for a child with this condition.
Ethan, known as ‘Buddy’ to family and friends, presents, on the outside, as a normal, bouncy 10-year-old boy. He has a big smile, loves pizza, ice-cream, trampolining, and hanging out with his friends – and, needless to say – Fortnite. However, that is where the similarity with other 10-year-olds ends. Every day Ethan has to undergo at least two sessions of physiotherapy, swallow a cocktail of medicines and breathe in antibiotics and mucus thinners through a nebuliser.