Ruth Nolan celebrates her 16th birthday today.
Instead of having a party with her friends – she will be marching outside the Dáil in between the 5 hours she will spend taking her daily intravenous drips and doing her breathing physio.
The Dublin teen was born with cystic fibrosis – a debilitating and lifelong condition that becomes worse with age. Symptoms usually include severe respiratory and digestive problems and life expectancy can often be more limited.
The damage on Ruth’s lungs is irreversible and worsening – her only hope for a more normal life is a life-changing drug called Orkambi.
But the Health Minister says it is too expensive to fund. Ruth says Simon Harris shouldn’t put a price on her life:
“My birthday wish is to get this drug made available to me. It would change my life. It would mean I could go out with my friends and not have my mum have to wait outside in the car with my drips all the time. It could mean I could go back to swimming which I love, and not have to get up at 3 am to take my medication. I could even have sleepovers. I need him to help me do all that”
This is just a two week supply of Ruth’s medication when she gets an infection.
Ireland has the highest rate of CF in the world and the numbers are continuing to climb. Philip Watt from Cystic Fibrosis Ireland says the benefits cannot be underestimated:
“Orkambi significantly slows down the progression of the disease and results in a decrease in hospitalisations of up to 40%. It makes a huge difference to the quality of life, ability to live a more normal life including getting married or holding down a job”
Ruth is the youngest of four children. Her mum, Elaine says she is horrified that she has to put her daughter ‘out there’ in order to get help for her sick child. She says she is not just campaigning for Ruth, but for all the other families who live with a CF diagnoses.
“We don’t think we are asking for too much. I just want Ruth to be able to lead a normal a life as possible. We are at our wit’s end. To see her deteriorate like this is just heartbreaking. Every day counts.”
You can help support Ruth and her family and all the others desperately trying to get access to this drug here in Ireland by signing this petition or by sharing Ruth’s story. She will march on the Dáil later today in a bid to get the Health Minister to take action.
For more information contact Cystic Fibrosis Ireland and support on social media with #yesOrkambi
