Thirteen-year-old Lauren Shaw from Clondalkin in Dublin has a degenerative disease, Friedreich’s ataxia, and avails of the services of LauraLynn.

Friedreich’s ataxia is a rare genetic disease that causes difficulty walking, a loss of sensation in the arms and legs, and impaired speech. The disease causes damage to parts of the brain and spinal cord and can also affect the heart. It affects approximately 1 in every 40,000 people.

LauraLynn is Ireland’s only children’s hospice providing paediatric palliative care in Ireland. The organisation cares for children with life-limiting conditions, and their families, by providing family support, symptom management, end-of-life care, bereavement support and direct care within the home and LauraLynn House.

To mark Children’s Hospice Week, which takes place from 22nd – 28th May 2017. Lauren describes her life and the support she receives from LauraLynn.

I STARTED COMING to LauraLynn in March of this year. I didn’t know much about them until then but I am happy that we found LauraLynn.

I enjoy the peace and the space to be myself when I come to LauraLynn. I’m able to do my own thing here. The staff are really nice and I love having chats with the nurses. I get on well with older people. I like the break from home here. I like the restaurant – they do pretty good smoothies there.

Getting involved in LauraLynn projects

We recently did a project with LauraLynn, the LauraLynn Oscars. All my family were involved but I was the main person. Everyone was scared of me. We had some funny moments together during the filming.

I’ve dyed my hair every colour from blue to green, pink, and purple. It is currently pink which I’ve wanted to change to for a while. We got it dyed ahead of the LauraLynn Oscar Award Ceremony. I use my hair to express my personality and mood.

My favourite school subjects are hometime and lunchtime. I do find school boring but if I had to choose my favourite subject it would be Social, Personal and Health Education. It can be enjoyable at times.

I have a brother and sister and I get on okay with them but sometimes we can argue. I also live with my mum, nephew and sister’s boyfriend. It’s a chaotic household.

My hobbies

I like my alone time. I love gaming on the Xbox. Grand Theft Auto 5 is one of my favourite games. As soon as I get home from school I like to get on the Xbox and game with my online friends. If I’m not gaming I enjoy watching gaming channels on YouTube.

I also like Netflix, mostly sci-fi TV shows. I used to be into reality TV shows like X-Factor, I’m A Celebrity and so on but I’m not that interested in them anymore. My favourite movie is definitely Dirty Dancing. I used to watch it during Saturday night sleepovers in my aunt’s house. I just love it. Nobody puts baby in the corner.

My favourite music is heavy metal. I love Nirvana, Metallica, Green Day, and AC DC. I can be whatever I want in my head – so anything in my imagination could become a reality. And I don’t have to get out of bed.

I got into these bands because my mum would have been listening to them when I was younger. My mum is always singing random songs but she does have some good taste in music.

If I could be a superhero I would be a Pikachu Pokémon. I just love them as they are really cute. And if I could have superpowers I would like to have telekinesis, to be able to make things move with my mind.

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