£100k is required to fund vital medication

Nicole Adams (28) currently has 20 per cent lung function and is relying on oxygen for small tasks such as walking up stairs.

Nicole, who worked as a hairdresser and ran her own salon, has now closed the business and stopped working due to her declining health.

Friends have contacted the Times to highlight Nicole’s condition.

They said: “Nicole is not eligible for a lung transplant due to picking up a rare form of cepacia during a trip to Thailand in 2014. This form of cepacia is so ‘unique’ that it does not have a name and Nicole is the only known person in the UK to have it.

“Nicole’s body is resistant to oral drugs and she has to be admitted to hospital for lengthy stays to have medication administered by IV. She needs access to a drug called Symkevi which would help increase her lung function. Without this drug it is unlikely her condition will improve and her chances of getting better are slim.”

Her friends claimed the NHS and US drug company, Vertex “have yet to reach an agreement to provide this drug in Northern Ireland and England,” adding “a deal has been agreed to supply this drug to those in need in Scotland and the Republic of Ireland.”

Family and friends have started a fundraising effort in an attempt to raise some of the £104,000 per year needed to cover the cost of the drug in a hope they can get enough money raised to buy a few months’ worth of the drug.

Thanking everyone who has supported the fundraising campaign, Nicole said: “I would just like to say how truly grateful I am from the bottom of my heart - and lungs!

“I never thought the day would come where I would ever need to ask for help but the support I have received has been amazing.

“I am so lucky that I live in such a wonderful place, where people come together to help each other out.”

If you would like to support the fundraising effort, search Nicole Adams Cystic Fibrosis on Facebook.