Hi, my name is Chris and I need your support.
I want to continue to live independently, freely and able to have quality of life for as long as possible, even though I am living with a progressive illness, called Juvenile Huntington Disease.
Tell us about you:
I am an active person. I get up early every day. After breakfast, I go to the shops, library or to the sailing school. I walk, ride my bike and take taxis or the train or a bus to get around. Now that I have a bicycle again I cycle to Simonstown and back in under an hour. I like to go to Kommetjie from Simonstown.
Sailing is my passion. I sailed to St Helena Island twice and once on to Ascension Island and Brazil. The people were nice and friendly and it was beautiful.
My dad had Huntington Disease and eventually died from the illness a few years ago. I didn’t see him since I was small and he took me up in a Cesna once. I like to go to the beach and watching the sea. Swimming is not my thing.
I enjoy good food and having picnics on the beach or in the mountains. Kwikspar has delicious savoury bread. The Lekker's croissant & coffee special after 3pm is my favourite. I always have a chocolate croissant. I like burgers from Spur too. At home we mainly eat eggs and yoghurt and cheese instead of meat.
I also like to play poi and stretch my hands this way. I used to enjoy going to the movies on Tuesdays at Longbeach Mall. Now I watch movies at home. I get dvds from the library. I love Pirates of the Caribbean, Stripes and White Squall. American Sniper was one I watched and enjoyed lately.
I am a Christian and I go to different churches. On Christmas Day last year, we went to the tiny old church near our home before breakfast.
When Aunty Edith, uncle Werner and my gran Joy are here, we go to the Surfers church in Muizenberg. Sometimes we go to Fullies in Fish Hoek or the Simonstown Methodist church. I say prayers for my brother and everyone I love.
What is your experience with HD?
I saw what my brother is like with this illness that we got from my dad. I am lucky because my only worry is my stiffness and pain in my hands. I need a bit of help to do things but I try to move around. I don't think I can windsurf anymore but I can still ride my bicycle so I am grateful for that.
Support given thus far:
I can be with people who care for me without going in to a hospital. I can still do things and go places freely. I don't feel so scared now that I know I am getting help and want to stay free and not in an institution. I get help from the Neuro Genetic clinic at Groote Schuur Hospital, The Day Hospital and other referral pathways.
HASA has raised some funds for my care but they can’t sustain this without funds coming in. I am now living off my Disability Grant with some financial help from HASA, family and friends but it is still not enough to cover my daily care and basic needs.
How you can help:
JHD is a deteriorating illness. I need to think about what I might need down the line like a place to live and someone to care for me where I can still be able to do these things that I love and keep me happy.
Some things that can help me in the meantime:
Mattress Protector (double bed)
Linen i.e. pillowcases, sheets & duvet covers (preferably cotton)
Vegetable Juicer (second-hand or shop-soiled is fine)
Respite Care/ Volunteer to spend time so my carer can get a break.
Encouraging words from HASA Director, Michael Howard:
"If you and Chris can know you are surrounded by the things you love, through the dark times that await you, and most especially in death, you will have made this imperfect world Perfect. That is the purpose of life … learning to die well and through that returning home – to Love."(Michael Howard, 2016)
What is Juvenile Huntington Disease?
Juvenile HD is a form of HD characterized by the onset of symptoms under the age of 20. HD is a neuro degenerative genetic disease whereby the gene positive individual presents with cognitive and behavioural symptoms causing the individual to progressively deteriorate.