My brother Ryan with Huntington's disease

Hi there, and thank you for reading. My brother Ryan was born in 1984, which makes him 38 in August this year.

 

Sadly, like his mother and mine, my mothers brother; our uncle, and our grandfather - now all passed - he has inherited the rare (and terrible) disease of Huntington's. A degenerative disease that causes a progressive breakdown of nerve cells in the brain, and has a wide impact on a person's functional abilities, and usually results in movement, thinking (cognitive) and psychiatric disorders. Those diagnosed with the disease usually lose the ability to care for themselves in less than 10 years and will require palliative care in their final years. My brother is already well along with him being unable to work and drive for several years now.

 

The chance of inheriting this disease is 50%, which, if you were gambling, would be considered fantastic odds. Unfortunately this jackpot is not one you want - there is no known cure.

 

My father and I have created this Gofundme in an attempt to try to cover some of my brothers ongoing medical costs. Currently we are in the process of having Ryan undergo a trial program named "Wave", which involves an experimental drug that aims to stop the "Huntingtin" protein from being produced in humans, the effect hoping to be to slow down the progression of Huntington's disease or improve symptoms for those with the disease.

 

The trial, a "randomised, double blind trial" which means that neither the researchers nor the patients know who is receiving the drug, and who is receiving the placebo in this case. The trial is relaunching after the previous trial was ended late last year after it was found to regrettably accelerate the condition.

 

Although we hold out hope that this trial will benefit my brother, even the success of this trial will not prevent or undo his symptoms, so we are aiming to try to make Ryan more comfortable as his condition worsens, with carers who can help to provide him with nourishing food to keep his weight healthy (the uncontrolled movements cause muscle and fat loss, causing sufferers to become underweight), help him maintain good hygiene (sufferers of HD cannot easily wash or shave for example), and also take him out for leisure activities to try to keep up morale and help him to have a good quality of life.

 

In addition to this, to keep Ryan safe and comfortable, many modifications are required to his living areas, and much equipment. Ryan has never lived out of home and has moved from his childhood bedroom to a granny flat which was converted from our family homes garage. This gives him a sense of independence, though my father is still able to monitor him. As Ryan's condition worsens, his need for specialist equipment such as sturdy chairs that recline (in order to control his movements) are required, often to the tune of several thousand dollars. As you can imagine, in today's day and age, this is a debilitating cost for the family.

 

We have set what we think is a modest and achievable goal - we are expecting that the costs of participating in the trial and related costs to exceed $100,000 AUD. If the goal is met, I will happily create an Instagram page or similar where we could keep all those who donated abreast of all the latest developments.

 

Any amount is appreciated, and I thank you for reading this far.