Cystic Fibrosis drugs joy for Downpatrick toddler in time for Christmas

A Downpatrick family have received the " best Christmas present " to date after their little boy picked up life-enhancing medication yesterday.

Two-year-old Lorcán Maguire was diagnosed with Cystic Fibrosis as a newborn, and since then, mum Jen and dad Dermot have fought a long campaign to get the expensive drug Orkambi free through the NHS.

And in a welcomed move, Department of Health Permanent Secretary Richard Pengelly announced in October that a deal had been made so that Orkambi and Symkevi could be accessed by CF sufferers.

The toddler picked up his "magic medicine" at the Royal Victoria Hospital for Sick Children on Tuesday and after some observations, was discharged home to celebrate with family and friends.

Mum Jen said that the news is bittersweet as she knows of other patients who are awaiting the same "gift."

She shared the news on Facebook and vowed to keep fighting for families in need of the drugs.

Jen said: "Yesterday something very wonderful happened. Lorcán got his Orkambi.

"I’m so relieved that the day finally came, I hope all of those waiting get their call soon, I know the team here is doing all that they can.

"I am sending so much love to everyone and we won’t stop fighting until everyone has access to a drug that can help them. I feel so lucky and so grateful, I was crying my head off driving home while Lorcán slept behind me.

"So many people never got this chance and my heart breaks for them and for their families. You are in my heart and my thoughts. Thank you so much everyone for every single thing you have done to support us and support the campaign. Merry Christmas."

Keep up-to-date with all the very latest news, what's on, sport and everything else in Belfast and beyond with the Belfast Live app.               

Only select news that interests you by picking the topics you want to display on the app's homepage. Plus, our enhanced user experience includes live blogs, video, interactive maps and slick picture galleries. Download it now and get involved.          

Click here to get it from the App Store or here for Google Play .