Eleanor Moody has received support from Primrose Hospice’s Children & Young People team due to her father having Huntington’s Disease.

She is our Young Ambassador and you can read more about her story below, or listen to a recent radio interview with Michael ball here.

“Primrose Hospice has supported me and my family since I was around 6 years old; I’m currently 14 and have had continuous support ever since.

I was referred to the hospice because my Dad had Huntington’s Disease – a rare neurodegenerative disease that runs through families and takes away the capacity to think, move and talk. It meant my Dad required full care towards the end of his life, he died at the start of 2021. Without Primrose Hospice, I don’t think I could have gotten through what I have and be who I am today.

I get lots of support from Primrose Hospice and I particularly enjoy attending teen group where I am able to meet and talk to other young people who have experienced similar things to me. It is nice to be able to have a space where I am able to talk about my problems if I want to, but also be able to forget and have fun.

I have received counselling for just under a year, I didn’t have to be on the waiting list for months and it was quick for me to be referred and start the sessions. Counselling has really helped me cope because I know there is always someone there for me. Having counselling at Primrose Hospice is a bit like a journey because there is someone who sticks with you through the highs and the lows and will never judge you. They listen, give great advice and strategies to manage overwhelming feelings like sadness, shame and anxiety.

After having counselling I’m now feeling good, I am not going to forget what has happened and there will be tricky times to come but I feel more able to face challenges and the future with more optimism and hope. I no longer have weekly sessions but, with Primrose Hospice, I know if I’m ever struggling again it is quick and simple for me to access more support.

Primrose Hospice is really important to help people with life-limiting illnesses and their families. They have been a huge support in my life, enabling me to become resilient and cope with trauma and loss, to move forwards and succeed with education and relationships with others. At Primrose Hospice, the volunteers and staff become like family. The ongoing support I have received is something I am not sure I would have been able to access anywhere else.”

You can find out more about our Children & Young People service here or contact us:

T: 01527 889799