5 Questions

5Questions

with Katy Parry

Katy is a Rare Navigator for Same but Different. Her role is to support individuals and families who have had a rare disease diagnosis. She helps them navigate that often complex journey, whether it is by liaising with health, social services or just being a listening ear.

Photographed by Ceridwen Hughes

Please share a little background about your rare journey with us?

In 2013 when my son Ewan was 5 years old and my daughter Niamh was just about to turn 3, Ewan was diagnosed with a rare type of brain tumour, PNET Medulloblastoma stage 4. Originally, he just had a turn in his eye so I took him to the opticians. He had images taken of the back of his eye, as usual, but from those they requested that we went to the hospital to be seen the following day. We went along to that appointment, at which they booked an MRI ‘just to check’. The MRI confirmed that there was a mass and that it had been causing the pressure that was seen in the images at the opticians. Safe to say, make sure you get your children’s eyes tested regularly, as they can diagnose so much through the eyes. We were sent straight to Alder Hey Children’s Hospital for specialist care and a biopsy and unfortunately it was malignant. Sadly, after a lengthy and difficult battle with many issues with treatment, Ewan passed away at the age of just 7. He was incredibly brave and along with his sister Niamh, continues to be the reason that I do what I do.

What do you do for yourself?

I love to spend time with my family, going on walks with our 2 dogs. I am also a bit of a ‘bargainaholic’ so love to go for a mooch in the shops, including charity shops. I suppose it is a way to disconnect from the day to day. I love to turn my hand to different crafts, so have a house full of bits and bobs. My most recent hobby is paddle boarding which I have taken up over the last few years. I absolutely love being in the middle of a lake paddling around, the pure freedom is just all consuming. If it is something that you are wondering if you would enjoy and you are able to, definitely give it a go. What drives you?

After losing my son I went straight into work. I tried working in residential care, and also worked as a 1-1, both working with children with additional needs. I felt that something was missing and often discussed this with my counsellor. I felt that I needed to use my experience of the issues that we had faced as a family, and that I needed to use those skills to support other people through their journeys. Knowing what it feels like to be stretched in every direction, feeling helpless and being all consumed by the road ahead, I hope that my input with the families that we support can offer some relief from their difficulties.

In your role you offer real, practical support. What other advice can you share with those on their own rare journeys?

Be gentle to yourself. The journey that you are on is relentless and although it may calm from time to time, it is always good to be able to protect yourself from the next wave crashing. Enjoy the calm in amongst the storm. I mean that, really enjoy it. Make memories and take loads of photos. Keep all of those daft pictures and dried out playdoh crafts. You will one day look back on those items and feel the joy of that moment. And possibly the most important, live like no one else is watching. If you want to have your Christmas decorations up in November, do it. If you want to go and get fuel dressed as an elf or the queen from Alice and wonderland, do it. Tomorrow is promised to no one, so enjoy the time you have with those you love and cherish. What do you most enjoy about your Rare Navigator role?

Helping people in their time of need. There really is no other way of putting it. Sharing the skills I have to ease someone else’s struggles.

If you or your loved one lives in North Wales you can access the Rare Navigator service by visiting www.samebutdifferentcic.org.uk/support-services

Rare Disease Uk Is The National Campaign

Rare Disease UK, run by the charity Genetic Alliance UK, provides a united voice for the rare disease community by capturing the experiences of people affected by rare conditions and working with our supporters to raise the profile of rare conditions across the UK. We seek to bring about lasting change for better health and quality of life for individuals and families affected by rare conditions, and to ensure that people and families living with rare conditions have equitable access to high quality services, treatment and support. Rare Disease UK is focussed on ensuring the new UK Rare Diseases Framework is as successful as possible, and that people and families affected by rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment. We coordinate Rare Disease Day in the UK. We have lots of ways you can get involved in celebrating and supporting Rare Disease Day on 28 February 2023. Share your story, photos, take part in a social media takeover, be a press volunteer and more. Click here to find out how you can get involved.