YOUR STORY
YOUR STORIES
Hi, my name is Amy McSweeney and I’m from Middleton County Cork. Our daughter Emily is 11 years old. She was born on the 4th of April 2012. Emily was born with a cleft lip and palate and was later diagnosed with a developmental delay, autism and an epileptic encephalopathy called Lennox Gastaut which really means she just seized all the time with lots and lots of seizures….
My name is Kayleigh, and I have a four year old girl called Nikki, and she has acute lymphoblastic leukemia. We are from Wexford, and we have to travel to Crumlin a lot for treatment. Nikita was diagnosed when she was just after two, uh, she’s nearly five now in October, so she’s done fantastically all through her treatment….
My name is Hayden, I’m 17 and I live in Clondalkin. When I was a baby I cant remember that much but I had numerous surgeries to see whats goin on with my heart, couldn’t fix it. It’s a heart disease, they, the doctors and nurses tried to figure out what was going wrong when my heart got worse I would go to school and feel ill so I would just have to go to school ring my mom and go to the hospital every single time it happened…
Hi I’m Caroline, I work in LauraLynn on the community team. So Lauralynn was founded by the McKenna family and they had two young girls who very sadly passed away within a short space of time and the family did lots of fundraising to create this wonderful organisation that provides palliative care to children with life limiting conditions…
Hi, I’m Sam and this is my daughter Isabella. She’s nine. Isabella was born with a rare neurological condition called Aicardi Syndrome and she was diagnosed at four days old. So when we got Isabella’s diagnosis, it was like our world was turned upside down. You know, we’d gone into hospital to have our second child. We were very excited to…
I’m just on my way down to pick Aideen up from the Special Care Unit which she attends Monday to Friday from 9 till about half 2. And Aideen’s Special Care Unit, this week are having their fun week so I decided to dress up as Captain American to try and fit in with them all down there.Aideen is 12 now and when she was born we never got a diagnosis…
Ann-Marie: When Katie got out of hospital, she had a central line in so we had a visit from the community nurse, quite regular. And she knew, the community nurse knew that we were … not struggling … we were glad to have Katie home, but when you don’t have that medical [team] behind you at home, you know, you were used to that nine months in…
Basically Matilda was palliative care from she was five days old. It was 10 to 5 in the afternoon on a Thursday and the consultant said, ‘your little girl has a very serious condition, it’s called Edwards Syndrome, Trisomy 18’. And my husband and I immediately began to cry because she definitely had a diagnosis of something. I had never heard of…
