Daniel was a courageous young man who died at the young age of 36 having fought his battle with Huntington’s disease (HD) for 20 years.
HD is an hereditary, autosomal dominant, neurodegenerative disease. This means any child born to a parent who has the faulty gene has a 50% chance of inheriting it themselves and if inherited this person will, at some point in their lives, develop Huntington’s disease.
Mostly, HD Symptoms begin in mid life, however sometimes symptoms can begin in early childhood, or as with Daniel, during adolescence.
HD is a progressive disease that causes emotional disturbances, cognitive impairment and motor symptoms. Usually over about 20 years (8-10 years in children) people decline to a stage of needing 24 hour nursing care, unable to speak, eat or do very little for themselves.
Having lived with Daniel through this, we discovered that there is still a superb quality of life possible, which is why it is so important for us to share Daniel’s story.
Due to a complex family background, there was no known history of HD in Daniel’s family, so when his behaviour became unmanageable in mid teens he was ‘written off’ as a ‘bad one’ and expelled from school.
With no positive influences in his life he soon took to a world of youth crime, then deciding this was no way to live totally withdrew from society, to the extent of only going out after dark.
After several years, eventually finding the right support, and using his beloved dog Suzy to gain confidence, Daniel was able to start stepping out into the world again.
By now, with the knowledge that he probably had HD, he was a very frightened young man of 24, however he did not let HD stop him from grabbing every life experience he could.
This is just a snippet of Daniels life, however during his journey from being fully able and active to the day he died, he never stopped enjoying life and smiling giving hope and courage to anyone else on their journey through HD.
His beloved dogs Suzy, and later Rolo played a very important part in making his life the fun that it was.
Lastly, one of the other fears for people with HD and other neurodegenerative diseases, is the thought of not being able to communicate in later stages. Daniel again proved the books wrong. He always found a way to let everyone know if he was happy, fed up with you, in pain, or excited. Believe me you were never left in any doubt!
We had a roller coaster ride through HD with Daniel, but would not have missed it for the world.
Thank you for doing him the courtesy of reading this. If you would like any further information on Huntington’s Disease please do Contact Us or the Huntington’s Disease Association. They have local support groups as well as a Regional Care Advisory Service.
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