PARENTS Kim and Stefan Roberts have spent the past two and a half years living in fear after their daughter was born with Cystic Fibrosis (CF).

Simple things that most people take for granted like growing up, getting a job, getting married and having children are all uncertainties for two year-old Ivy.

Mrs Roberts, who is based in Dwygyfylchi, said people look at Ivy and think she is alright because it is how she appears CF is an invisible disease and one that is very upsetting for the families that have to live with it.

She said: "When I found out (when Ivy was three weeks-old) I went into state of shock and didn’t believe it.

"I knew nothing about CF at the time only negative stories of children dying young to the disease, I questioned it couldn’t be possible as nobody else in the family had it.

"Tears strolled not just for that day but for months after and a piece of our hearts was taken forever."

Ivy started medication right away taking preventive antibiotics, creon granules every time she ate - to help her absorb the fat and thrive, daily vitamins and sodium chloride.

When she gets a cold/cough she is put on a second antibiotic to try and shift it before it turns into a chest infection - a chest infection for people with CF leads to long term lung damage.

She also has percussion twice a day for 20 minutes at a time.

Mrs Roberts now has a new hope having found out about a new medication called Orkambi - a precision medicine that tackles the underlying cause of cystic fibrosis rather than just managing the symptoms.

Currently the medication is not recognised by the NHS with a spokesperson saying the National Institute for Health and Care Excellence unable to recommend it as "its considerable cost was not in balance with its likely benefits".

Mrs Roberts said: "We are ever so desperate for ivy to be able to lead as normal life as possible and have a healthy long life.

"We wake up daily worrying about her future will she be able to do the job she wishes? Get married? Have children?

"It would be our dream come true forever more when Orkambi becomes available on the NHS.

"This drug will keep Ivy stable, it will halt her cystic fibrosis allow her to do all the things we’re scared she won’t be able to achieve due to the disease."

A petition has been established which she has got behind getting as many names as possible to push for the introduction of this medication.

So far the petition has received more than 112,000 signatures and seems to now have caught the eye of the national parliament.

"The Petitions Committee (the group of MPs who oversee the petitions system) have agreed to schedule a debate on this petition. We’ll let you know the date of the debate as soon as we can," a post on the petition reads.

Mrs Roberts encouraged as many people to sign the petition as possible to continue the fight to have Orkambi introduced under the NHS.

The petition can be found at