Kim and My Challenge
Eric Church is raising money for Huntington's Disease Association
Story
In 1995, Kim my wife and best friend, received a positive result from her predictive test for Huntington’s Disease (HD), we thought our World had come to an end. Kim is a Cup half full person, ask anyone who knows her, but this news was one of the few times it wasn’t.
In 2016 we were told that she had become symptomatic, her HD was now visible to the trained Eye, and of course those who are closest had already seen it. Although HD starts its evil from birth, you are not really aware of it until the symptoms are visible, this is another end of our World point, a double hit.
In 2016, Kim was offered one of only 46 places in the World to take part in a Medical Trial of a new Gene Silencing drug, Tominersen, Tominersen was delivered every 2 months for three and a half years via Lumbar Puncher, Kim put up with all the pain and visiting Hospital often five times a month. Tominersen gave us hope again and the larger HD Family, the belief was that by reducing Huntingtin (the damaging Protein), it would slowdown or stop HD's onslaught. The trial was stopped earlier this year, it reduced Huntingtin by up to 60%, but had no affect on the symptoms, and in fact, caused some participant's Brains to swell. Another end of the World, our hope was taken away.
Kim has been through so much, but still has the outlook of a Cup half full, one of the most 'look on the bright side' people I have ever met.
There is an organisation that helps HD sufferers and their carers, the HD Association (HDA), they do a fantastic job, especially the care advisers, incredible people, the HDA depends entirely on charitable donations for all that it does and I know the day will come when Kim and I will need help from a HDA care adviser.
In 2016 we were told that she had become symptomatic, her HD was now visible to the trained Eye, and of course those who are closest had already seen it. Although HD starts its evil from birth, you are not really aware of it until the symptoms are visible, this is another end of our World point, a double hit.
In 2016, Kim was offered one of only 46 places in the World to take part in a Medical Trial of a new Gene Silencing drug, Tominersen, Tominersen was delivered every 2 months for three and a half years via Lumbar Puncher, Kim put up with all the pain and visiting Hospital often five times a month. Tominersen gave us hope again and the larger HD Family, the belief was that by reducing Huntingtin (the damaging Protein), it would slowdown or stop HD's onslaught. The trial was stopped earlier this year, it reduced Huntingtin by up to 60%, but had no affect on the symptoms, and in fact, caused some participant's Brains to swell. Another end of the World, our hope was taken away.
Kim has been through so much, but still has the outlook of a Cup half full, one of the most 'look on the bright side' people I have ever met.
There is an organisation that helps HD sufferers and their carers, the HD Association (HDA), they do a fantastic job, especially the care advisers, incredible people, the HDA depends entirely on charitable donations for all that it does and I know the day will come when Kim and I will need help from a HDA care adviser.