We spoke to a young girl who bravely shared her story of what it was like to go through school after one of her parents tested positive for Huntington's disease.

Tell us a little about you and your background

"I’m Lemarnie, I am 15 years old and I live in Wiltshire with my family. I am currently homeschooled but I will be going to college next year. In 2019, my dad was diagnosed with Huntington’s disease. That is when we found out from his side of the family that the disease was hereditary. My mum looks after my dad and I am always there to help when needed."

Did you know that Huntington’s disease affected your family before your dad tested positive? If you didn’t, had you heard of Huntington’s before?

"None of us had any idea that Huntington’s disease affected my dad’s side of the family until they recommended that he got tested. We did know what Huntington’s disease was due to a storyline in Casualty involving one of the doctors. This storyline helped us learn more about it and what would happen next."

What was it like being a young carer alongside your mother?

"Helping my mum out when she needs me does not bother me in any way. She does so much for my dad and me and my siblings. She is one of my best friends so I would do anything to help her and my dad."

How did this affect your school life, has anyone in your school heard of Huntington’s before and is there any support for you?

"When people found out about my dad, people actually weren't very nice about the things that were going to happen to him. No one knew anything about it which meant I had to explain to them over and over again which is difficult as it is already a lot to go through. On occasion, people were horrible about my dad’s Huntington’s and when reported, nothing much was done about it, some teachers did not even know my dad was ill or what Huntington’s disease was. Luckily some friends were very supportive and they would ask about how I was doing and how my dad was doing. Something needs to be done to help educate schools and teachers about the disease so that there is support for people like me."

How has your mindset and life changed since being affected by Huntington’s?

"I’ve really learned to appreciate the little moments. Not long after his diagnosis, my dad found out that he was going to be a grandad and I was going to be an aunty. Knowing that time together was limited made me cherish the small things that happen in our family. We have just moved homes so that the house is ready for when my dad needs things such as a lift and a wet room. Although Huntington’s has changed our way of living in a lot of ways, it has made our family much stronger and I would not change this for the world."

Thank you so much to Lemarnie for sharing her story with us.

It can be very difficult as a young person in a Huntington’s family. It is not something that many people of that age have to deal with. Here you can find more information about our Youth Engagement Service. We also have a handy teachers guide which is a great resource to share with schools to help them better understand what Huntington’s disease is and what you will be going through.

If you are affected by Huntington’s disease and are in need of support or advice on testing, please contact us on 0151 331 5444 or email info@hda.org.uk. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with Specialist Advisers waiting at the other end to offer you support.  

If you have a story to share, please get in touch with us via comms@hda.org.uk.