We’re Carla and Kris Thompson. We’re from Mullingar, Co Westmeath and Lucy Thompson is our daughter. Lucy is our eldest girl of two. She has a little sister called Romy who has just turned two. Lucy will be six in October, and she lives at home with us.

Lucy was diagnosed with a rare genetic disorder when she was 11 months old called Zellweger syndrome, and it’s one in 50,000. She is going to be 6 in October so she’s already defying the odds and she’s the strongest girl that we know. Lucy was in Temple Street at the time and was suffering with bad muscle spasms and I think the nurse could see the exhaustion in me as I was pregnant with Romy, our second daughter at the time so she referred us here to Laura Lynn.

Here at Laura Lynn Children’s Hospice, every family is given 15 nights short break per year for the child to come and experience something different and have some fun and magic. But there’s also accommodation for families to stay and recharge their batteries if they wish and they’re looked after too. We offer end of life care and symptom management, but we also offer breaks where children can choose special things they’d like to do and enjoy during a break here in the Hospice.

So palliative care means for us the opportunity to share as a family and make memories together. It gives us the opportunity so that we’re not full-time carers but rather, we’re a family.

We have three community teams around the country that care for children and their families at home. Families call on these teams to look after their child and family after a period in hospital with a new symptom, new medication or a period of crisis where the nursing and our family team will come and care for the family in their home.

The community care team can come out to us as well. We’ve had them at home as well and it’s just amazing to have all that support and even the music therapists and play therapists. Lucy enjoys it so much. We just know she’s happy. You, Me and Palliative Care means so much to us as a family. We get to spend precious moments here together. The four of us just being a family.

I’ve been a children’s palliative care nurse for over 20 years. And even though this population of people that we look after is small, the impact is huge. And it’s about caring for children while they are living and for them to live well and when the time comes that they need care to die, that care is given by people that they know they’re familiar with and trust.