Go ahead, a Cheann Comhairle.

Sentiment score: 0.00

I welcome the women's shed here as well. My family now lives in Wexford as well. My father is in the men's shed in Gorey and he loves it down there. Thank you, a Cheann Comhairle. I am delighted to have the opportunity to talk about rare diseases. I have been contacted by many residents in my area about Duchenne muscular dystrophy. As the Minister knows, Duchenne muscular dystrophy is a severe, progressive genetic disorder that weakens muscles and affects around 100 children in Ireland. Two of those children are in my area. They are brothers Conor and Dean from Lucan. They are nine and ten years of age. I met with their parents, Karen and Jamie, as they fought to secure life-saving treatment for their two beautiful boys. They were campaigning for their boys to have access to the drug givinostat. Givinostat is not available for Duchenne muscular dystrophy in the Republic of Ireland despite being available across the North.

Sentiment score: 0.19

I was at a recent briefing in Leinster House and listened to families affected by Duchenne muscular dystrophy. I cannot say there was one person who left that briefing, across the parties, who was not affected listening to the real-life stories of these families' struggles in trying to get this lifesaving drug. I thank every person who contacted, rang or emailed me or called to my constituency offices in relation to this. There has been progress and I welcome the Minister's comments in relation to the progress. I accept the struggles she had with other jurisdictions in trying to get this across the board so that is to be welcomed as well. While it is welcome, we still have a bit to go. What I would like to see happening is that the next step in this process is not delayed. In fact, I would like to see the next step in this process prioritised so that the drug givinostat gets to the children who need it. Families should not have to watch their children lose abilities while waiting for access to treatment that already exists. Lost abilities cannot be recovered. As we heard directly from parents, "time is muscle". They are some of the most poignant three words I have ever heard in any briefing from anybody - "time is muscle". Every day these children are waiting for this life-changing medication, their children's muscles are literally wasting away. Parents and campaigners also want to see equal access to the drug for Duchenne muscular dystrophy. Campaigners want to see that the eligibility criteria for givinostat are aligned with the UK National Institute for Health and Care Excellence, NICE, approach, ensuring access for boys who can walk or stand with or without support. They are looking for the same criteria that is there so that boys in the South are not disadvantaged over boys in the North and everybody receives equal access to care. I will finish up on a small point. We are talking about early diagnosis and how it is key for early intervention. I speak as a person who is living with multiple sclerosis. I often say I am not living with multiple sclerosis but multiple sclerosis is living with me - and God love it. However, it took me a long time to get to that place. I know it is not a rare disease and there are about 10,000 people living with multiple sclerosis in Ireland but it took me a long time to get diagnosed. I was waiting to get diagnosed and get the treatment I needed. The treatment provided by the HSE is absolutely brilliant. The neurology service in Tallaght is absolutely fantastic. If you can get early intervention for no matter what it is, it makes a big difference. The access to public health nurses in Dublin Mid-West needs to be looked at. There are children who are not getting their full developmental checks and that is something we could look at as well.

Sentiment score: 0.22