A Downpatrick mum has been Tweeting Richard Pengelly every day for over a week in a plea for his help following the hospital admission of her poorly toddler.
Jen Banks, 34, has been campaigning for the drug Orkambi to be made available in the UK, which is currently available to Cystic Fibrosis sufferers in the US, Australia and 11 countries in the EU including the Republic of Ireland.
Her two-year-old son Lorcán was diagnosed with Cystic Fibrosis when he was just 12 days-old and is currently an inpatient at Royal Victoria Children's Hospital receiving IVs for pneumonia.
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Currently there are around 480 people with CF in NI. Orkambi is the only one of its type available to treat the causes and symptoms of CF for children as young as Lorcán.
It was licensed for 6-11 year olds by the European Medicines Agency in Europe in January 2018, and was again licensed for 2-5 year olds in January 2019.
Despite this, the National Institute for Health and Care Excellence (NICE) has rejected its use on the NHS.
The CF Trust's online petition reached over 100,000 signatures last month and the issue will be debated in Parliament on 10 June.
Jen told Belfast Live that she is extremely grateful for people who signed the petition.
She said: "I am so pleased the debate is happening and so grateful to everyone that signed the petition.
"I urge all of our Northern Ireland MPs to go but I would be hopeful that interim access can be arranged before the debate even takes place.
"It’s an embarrassment that there is going to be a second one after the first demonstrated so much support from MPs across the U.K. for the drugs to be made available.
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"In the the Republic of Ireland they have a pipeline deal which means as the new drugs come out of trial or down in age range those who are eligible can access them very quickly.
"I have a friend in the south who has a little boy who has just started taken Orkambi and already you can see his wee face starting to fill out."
The Permanent Secretary of Department of Health and Chief Executive of Health and Social Care NI has not responded to these cries for help and allegedly told Cystic Fibrosis Trust that a meet up would "not be neccessary."
David Ramsden, Chief Executive of Cystic Fibrosis Trust wrote to Pengelly asking him meet up with them to discuss interim access to Orkambi until a deal is agreed upon.
It is understood Mr Pengelly responded saying: "NICE currently does not recommend the use of Orkambi for treating cystic fibrosis and has published guidance to this effect.
"In the absence of a positive determination from NICE for Orkambi and Symkevi they are currently not offered as a routinely commissioned treatment for cystic fibrosis.
"This is a difficult issue which includes consideration of questions relating to cost and clinical effectiveness and access to commercially confidential information, which adds further complexity.
"I feel that a meeting at this time would not be necessary, but I will reconsider after the SMC has fully completed their assessment."
Jen shared her frustration with this denial of a meet up by the Permanent Secretary.
She said: "This is a tragedy. It's very upsetting that he won't meet with members of the CF community here or with the CF Trust.
"I have been Tweeting him every day for his help.
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"With no working Assembly he should be upholding the duties of that state by ensuring the health of its citizens.
"The NI politicians are in support of access now but can do nothing."
Jen will be running a leg of the Belfast City Marathon tomorrow to raise money for the CF Trust and said that it will be challenging as she has spent the last week in hospital with Lorcán.
She said: "Coincidentally the leg I am running goes right past the hospital where my husband Dermot will be caring for the inpatient (but also impatient) toddler as my mother Hilary looks after baby Saorla somewhere nearby.
"I’ve barely moved from Lorcán’s hospital room or indeed Lorcán’s side for a week so it will be a challenging run indeed!"
She went on to thank those who have supported her in her difficult fight for Orkambi.
She added: "Thank you so much for your support everyone. It means so very much. Thank you for helping to keep the wee man who means the world to me alive for as long as possible."
Belfast Live contacted Richard Pengelly for a comment but have not had a response as of yet.
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