Children in Need – Allowing us to support young people affected by Huntington’s disease
In honour of Children In Need, we are sharing an interview with one of the lovely children that we are able to support due to Children In Need’s generous grant. Our Huntington’s Disease Youth Engagement Service (HDYES) and Specialist Youth Worker, James O’Connor, are funded by Children In Need meaning that we can offer support to young people aged 8-25 living in families affected by Huntington’s disease, including extended family such as cousins, grandparents etc. across England and Wales.
15-year-old Henry has kindly offered an interview in which he shares his thoughts and feelings on what it's like having a parent with Huntington's disease and how the support offered by HDYES has helped him. James has transcribed the following text from an interview phone call he had with Henry.
Henry – HDYES user
“My name is Henry and I am 15. My dad has Huntington’s disease so I have spent time with James from the Huntington’s Youth Engagement Service. Outside of the Huntington’s Disease Association, I do lots of stuff like music and reading and I guess probably quite normal activities. I’m very interested in History and the world around me, literature and keeping up to date with current affairs. I’ve got a great love or rather mixed relationship with current affairs but it is as it is and it’s interesting to me. That’s me I suppose.”
Why did you get involved with the Huntington’s Disease Youth Engagement Service (HDYES)?
“A long, long time ago someone within my family passed the Huntington’s gene down to my dad and he eventually became symptomatic because people with Huntington’s disease genes tend to. Around that time, I think the Huntington’s Disease Association got in contact with me actually or probably the student wellbeing officer from my school. Either way, a couple of years ago now I was told about the charities outreach and how they’d send James around mainly meeting children of parents with Huntington’s disease. As someone within that category, I met up with James many times in school and then online during COVID-19 but I guess I’ve had a sustained engagement with HDYES.”
How has HDYES helped you so far?
“That’s a difficult question because I think a lot of what HDYES do as a service is far more about, like it says on the tin, engagement. Engagement is help because it’s comforting and I suppose that’s what it boils down to. Its support, its comfort and it’s also good to know that you’ve got at least some reliable people who will keep you up to date with trial information and medical news. Aside from that, it’s just nice to talk to a third party entity whether it be about Huntington’s disease or anything. I know that sounds like I’m using James as a counsellor but, I mean, am I not? Haha. We have brilliant conversations and I enjoy talking to James so it’s always a bonus if I get to learn about the disease that affects my life more than any other disease but I’d probably still talk to James even if it didn’t haha.”
What's the most important thing to you about HDYES?
“It’s really important for me to like who I’m speaking to and I like James. I take a lot of comfort in the fact I know anyone accessing the service will only talk to James because then I know no one is getting bad support. I know that James’ is very good at his job and is a good person, from what I can gather, I have no evidence otherwise! I think having someone friendly and approachable to talk to about Huntington’s is really important.”
Would you recommend HDYES to other families?
“If you’ve got Huntington’s disease in your family then yeah but if not then probably not because it would be a waste of your valuable time and you could probably just see a counsellor! So yea, I would but I’ve spoken about why!”
Is there anything else you’d like to say?
“I wish people all around the country would spend more time focussing on protecting services like HDYES and mental health as well as the NHS services that we have and are kind of under threat. If I had to make some kind of closing statement it would be that. That I want people to protect them if they can if they have the power to. But really, I just want people to try and stay positive. I know a lot of the people reading this transcript will either have Huntington’s disease or be going through some difficult times possibly seeing people they love have Huntington’s disease or become symptomatic or whatever vocabulary you want to use to describe Huntington’s disease or the effects of it taking hold.
Try and stay as positive as you can, it’s not an easy thing and I feel like I’ve come to know that, mostly, in the last couple of weeks because my dad’s just been put in hospital because of it. It’s pretty tough to sit by while he has to go through that and I worry that he’s going to miss us. I worry that he’s going to miss us more than we miss him because as much as we miss him, and as much as I don’t like that, I don’t want him to feel alone because I love him. I think the ultimate message and what I’m getting to is that I love him because I very much still see him and I very much still see him within him. I still see his personality and his interests and though he may not be as good at holding a conversation, he stills comes out with some nuggets of wisdom haha. He still makes me smile and laugh and I still need him in my life because he’s still such a positive entity despite the fact that he’s really struggled with this disease and going into hospital. So yea, as cheesy as it sounds, try and stay positive.”
James O’Connor – Specialist Youth Worker
“A huge thank you to Henry for giving up his time to help us show how we support him. HDYES is here for anyone with Huntington's in their family and we hope to be able to offer you the support you need.” – James O’Connor, Specialist Youth Worker
You can see from this interview that Children In Need’s support is imperative to the functioning of HDYES and the support of young people across England and Wales who are affected by Huntington’s disease.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].
In honour of Children In Need, we are sharing an interview with one of the lovely children that we are able to support due to Children In Need’s generous grant. Our Huntington’s Disease Youth Engagement Service (HDYES) and Specialist Youth Worker, James O’Connor, are funded by Children In Need meaning that we can offer support to young people aged 8-25 living in families affected by Huntington’s disease, including extended family such as cousins, grandparents etc. across England and Wales.
15-year-old Henry has kindly offered an interview in which he shares his thoughts and feelings on what it's like having a parent with Huntington's disease and how the support offered by HDYES has helped him. James has transcribed the following text from an interview phone call he had with Henry.
Henry – HDYES user
“My name is Henry and I am 15. My dad has Huntington’s disease so I have spent time with James from the Huntington’s Youth Engagement Service. Outside of the Huntington’s Disease Association, I do lots of stuff like music and reading and I guess probably quite normal activities. I’m very interested in History and the world around me, literature and keeping up to date with current affairs. I’ve got a great love or rather mixed relationship with current affairs but it is as it is and it’s interesting to me. That’s me I suppose.”
Why did you get involved with the Huntington’s Disease Youth Engagement Service (HDYES)?
“A long, long time ago someone within my family passed the Huntington’s gene down to my dad and he eventually became symptomatic because people with Huntington’s disease genes tend to. Around that time, I think the Huntington’s Disease Association got in contact with me actually or probably the student wellbeing officer from my school. Either way, a couple of years ago now I was told about the charities outreach and how they’d send James around mainly meeting children of parents with Huntington’s disease. As someone within that category, I met up with James many times in school and then online during COVID-19 but I guess I’ve had a sustained engagement with HDYES.”
How has HDYES helped you so far?
“That’s a difficult question because I think a lot of what HDYES do as a service is far more about, like it says on the tin, engagement. Engagement is help because it’s comforting and I suppose that’s what it boils down to. Its support, its comfort and it’s also good to know that you’ve got at least some reliable people who will keep you up to date with trial information and medical news. Aside from that, it’s just nice to talk to a third party entity whether it be about Huntington’s disease or anything. I know that sounds like I’m using James as a counsellor but, I mean, am I not? Haha. We have brilliant conversations and I enjoy talking to James so it’s always a bonus if I get to learn about the disease that affects my life more than any other disease but I’d probably still talk to James even if it didn’t haha.”
What's the most important thing to you about HDYES?
“It’s really important for me to like who I’m speaking to and I like James. I take a lot of comfort in the fact I know anyone accessing the service will only talk to James because then I know no one is getting bad support. I know that James’ is very good at his job and is a good person, from what I can gather, I have no evidence otherwise! I think having someone friendly and approachable to talk to about Huntington’s is really important.”
Would you recommend HDYES to other families?
“If you’ve got Huntington’s disease in your family then yeah but if not then probably not because it would be a waste of your valuable time and you could probably just see a counsellor! So yea, I would but I’ve spoken about why!”
Is there anything else you’d like to say?
“I wish people all around the country would spend more time focussing on protecting services like HDYES and mental health as well as the NHS services that we have and are kind of under threat. If I had to make some kind of closing statement it would be that. That I want people to protect them if they can if they have the power to. But really, I just want people to try and stay positive. I know a lot of the people reading this transcript will either have Huntington’s disease or be going through some difficult times possibly seeing people they love have Huntington’s disease or become symptomatic or whatever vocabulary you want to use to describe Huntington’s disease or the effects of it taking hold.
Try and stay as positive as you can, it’s not an easy thing and I feel like I’ve come to know that, mostly, in the last couple of weeks because my dad’s just been put in hospital because of it. It’s pretty tough to sit by while he has to go through that and I worry that he’s going to miss us. I worry that he’s going to miss us more than we miss him because as much as we miss him, and as much as I don’t like that, I don’t want him to feel alone because I love him. I think the ultimate message and what I’m getting to is that I love him because I very much still see him and I very much still see him within him. I still see his personality and his interests and though he may not be as good at holding a conversation, he stills comes out with some nuggets of wisdom haha. He still makes me smile and laugh and I still need him in my life because he’s still such a positive entity despite the fact that he’s really struggled with this disease and going into hospital. So yea, as cheesy as it sounds, try and stay positive.”
James O’Connor – Specialist Youth Worker
“A huge thank you to Henry for giving up his time to help us show how we support him. HDYES is here for anyone with Huntington's in their family and we hope to be able to offer you the support you need.” – James O’Connor, Specialist Youth Worker
You can see from this interview that Children In Need’s support is imperative to the functioning of HDYES and the support of young people across England and Wales who are affected by Huntington’s disease.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email [email protected].