HD National Youth Camp - 1997
Comments from the Campers
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Huntingtons a cow?
by Melanie Sands
Huntingtons Disease is a cow of a disease. It
affects so many people in so many ways, physically and mentally. One of the hardest things
for me to do is sit and watch how other people deal with it, when often I have gone
through the same experience. That really hurts me and makes me want to cry-lots. I love
having these camps without them I think we would have an even worse time dealing with the
issues that the monsters throw at us. I have learnt so much from these camps that thank
you sounds so tiny in comparison to what people like Dorothy and Ann-Marie have done for
us. They helped me realise the truths and the rumours about HD and special ways to deal
with all the horror that we see going on in our homes.
LIFE WITH HUNTINGTON'S
You were given green grass, You were given a picture, You were
given a life,
BUT ..... but the grass was gone,
And the picture destroyed, And the life had a horrible disease,
Huntingtons. A slow
painful disease that tears you apart.
WHAT I REMEMBER...
All I can remember about my mum who died of HD when I was 10 was that she was always sick. I
dont remember when she would be able to walk around and do normal things like my
friends mums. I dont think I ever knew what HD was before I came to the camp.
The smell of tobacco always reminds me of my mum - its a pity
she wont be able to light her own, one day.
No known cure
Generation after generation
There is always grief
No way out
Year after year
Our time is now
Together we can win
Can get it out in the open
All together now
Make new friends
Planning for the future
Salute to the heroes
Joanne Delcata, aged 14.
Why, why does Huntingtons effect the people who are so kind, people who are so
loving and generous and why does it happen at all.
I thought I knew and understood HD and took all the information I
had been told in. But obviously I havent and I need to learn more about it so that I
can have the strength to tell people about it, what it does to the brain and why the
people who suffer do stuff so slow and cant do two things at once.
My Dad has Huntingtons Disease and one day in the next ten
years or so my dad will pass away.
Someday I want to be able to tell people and not have to cry, but
when Im depressed all I can really do is cry and sigh.
My Dad and everyone that suffers with HD dont deserve this
disease, they should have a chance to live like the rest of us people who dont have
Lately I have been thinking about HD a lot and its dragging me
I would like to say this to my dad, I love you dad, I always will,
through worse and worse still I will help you get through, I just wanted you to know that
you will always be in my heart and hopefully we will never part
LIVE LIFE TO THE MAX!
No matter whatever happens to me,
whether I get Huntingtons or not
Im going to live life to the max.
And when my Dad dies Im not going to be depressed for the rest
of my life,
because hell always be in my heart,
and I know that he lived his life to the max.
"... but it got clearer at these camps - where you can talk to other people with
the same problems as you do. It really helped me to come to camp and listen to others talk
about the times when it has been hard."...
"... anyone with Huntingtons may not be alive in sight
after death but we will always remember them. I have learnt that no matter who you are or
how you act you will always be you. Knowing that there are always people to talk to helps
a lot. Huntingtons draws attention to the affected person and the closest person.
Looking back on the memory of the camp we shared,
Neath the stars above
For a moment all the world was right
How could I have known
wed ever say goodbye
and Im glad I didnt know the way it all would end nor
the way it all would go.
My life has certainly been changed
I couldnt miss the pain that I would have felt to have missed
From the Kids
by Adam, Paul and Sara Duncan
"Wee-eee! This is neat fun going down the big rapids."
This is just one of the things we did. We did all sorts of other
things. It was great thing for me going to the HD Camp. It gave me a big chance to express
the way that I cope and how well I know Huntingtons Disease. It was also excellent
to catch up with all of my great friends and meet as many people as I could. This was the
best HD Camp I have been to. Expressing the way I feel about HD means that I can learn how
to cope with HD by talking it out with the group and the other people that didnt
know much about it; we could tell them so that they could learn too ...
ADAM, 10 years old.
From the 19-23rd of April me and 34 other campers experienced the best
Huntingtons Camp for 5 years. With plenty of activities, free time, discussion on
HD, friendly people, and good memories this camp is the one that will never be forgotten.
The accommodation and the food were exceptional and you couldnt ask for anytyhing
better from the camp leaders. The environment was great and I hope that everyone from this
years camp and more new people all come next year. Well, thats about it for my
summary of the camp. Id just like to give a special thanks to the Wellington
Huntingtons Association, Nelson MS Society, and everyone who made this camp
PAUL, 12 years old.
This year HD Camp was the best yet. Everyone was more supportive and
helpful. It helped me so much and without it I would have been lost. I have so many
friends, old and new, and after this camp I have realised just how special they are. The
camps have helped me to cope better, and they make me realise that Im not alone and
that theres always someone to help. To all those who made it a reality, thankyou so
much for the opportunity to go ...
SARA 15, years old.
UNDERSTANDING, PATIENCE & DEALING WITH PROBLEMS
By unknown (male)
Ive really never understood about Huntingtons Disease. But
ever since I have come to the camps I have learnt so much. I live with it everyday.
Sometimes I get so stressed out that I cant cope. I tend to just bottle all my
feelings up and take it out on someone else, which I realise is not the way to go about
it. But it just happens. I lost a relationship over it, like this. I
would get stressed out with having to live with someone with Huntingtons, I would bottle
it all up. My girlfriend didnt know this and the littlest thing would just snap me
and I would just go mad and that is how I lost a one year relationship over a period of 3
months with this happening all the time. So I thought about it and I have decided
that I am not going to bottle it up anymore.
WHY HUNTINGTONS IS THE WORSE PART OF MY LIFE
It stole away my mum from a young age
It made the roles change
I have to look at mum and try not to cry - I want to be brave for her
I have no female rolemodel in my life
I want the real caring, loving mum I use to have
I am terrified of losing the person I love the most in the world
It makes me feel that mum is slowly slipping out of reach
I know I cant fix this - I cant make a cure
I am scared of putting my partner through what my dad has been through
I hate having this death note over my head everytime I get depressed, shake
or drop things
It scares me.