My name is Sam. I have led a life full of fun and was quite mischievous as a teenager.

I enjoy all things that young women my age do: I love to get my nails done, going for a relaxing massage or to the pub. I enjoy discos with my new social network and have developed a new passion for horse riding. I have always dreamed of visiting Disneyland at Christmas time to see the floats, this has been a lifelong dream.

 

My diagnosis

I was diagnosed with Juvenile Huntington’s Disease when I was just 19 year old, I knew about the condition as my father had it, although to get the diagnosis was a complete shock.

When I needed support from an outreach team, my social worker arranged for Julie O’Neil and Maria Glaister from United Response to come and meet me, and they spent time asking me about the support I wanted. I liked them and support began, I had support three times a day to ensure I took my medication and ate well. Two years on and I needed more support - this is when Supported Living was suggested.

 

How supported living has helped me

Supported living is working very well for me. I have now had 24/7 support for 16 months, I am able to stay in my own home, close to all my family, in the community I have grown up in. Supported living enabled me to remain as independent as I can, I have a great team who support me to achieve all the things I wish to do.

They make me feel safe, and always work hard to ensure I have all the opportunities that are open to everyone else - I think they go above and beyond!  I am feeling well and enjoying attending Lister Court for four mornings a week. I have a small team from United Response who care for all of my needs, from making sure I get the right medical appointments - this includes seeing professionals in Liverpool - to letting me scare them on the bumper cars at Blackpool. I have enjoyed days out and weekends away, as I mentioned earlier, I now regularly horse ride, which I just love.

 

How my support workers are awesome

I wanted to go to Disneyland, so they suggested that we fundraise. I came up with ‘Boogie Night’ and the wheels were set in motion. The Support Workers got in touch with my family and asked them to be involved. I wanted a raffle, so the team contacted lots of shops and places to get raffle prizes, a venue was confirmed for free, and the cost of the disco was covered by a husband of my support worker as a kind gesture to my fundraising.

On top of this, I also arranged a sponsor walk around Hammonds Pond with my team. The turnout was great!

 

A huge fundraising success

The Boogie night was a huge success, the staff worked all day to create a buffet for 200 people and get the venue ready. The Railway Club committee raised over £400 from their members and Louise was able to secure a donation from the Geoff Brown Charity for £500. I was in the Newspaper when that was given to me.

Over £3000 was raised and I want to thank all the United Response Support Workers who made my trip to Disneyland a truly once in life time experience. From travelling to London via train with Julie and Louise and seeing London at dusk from the London Eye, to the Eurostar trip with loads of baggage and the time we spend seeing as much as we could at Disneyland.  Again, I managed to scare both of my support workers on the rollercoasters!  (I am fearless) My goal of seeing the Christmas floats was exceeded. They are amazing, I had the best time ever. (I love Tigger)

Written by Sam Simpson

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