Chase's Journey -Taking on Tourette Syndrome

On 10th May Chase Black’s mum Krystal dropped Chase (13) and his two younger siblings off at school, kissed them good-bye, told them she loved them, then headed off to work, totally unaware of the dramatic effects this day would have on Chase and the whole family over the next few weeks, and the months ahead.

Late in the day Krystal was contacted by the after school carers, who had noticed that Chase seemed to have a ‘twitch’. His mum took him to A & E, and there began the first of many tests to determine what was happening with Chase.

Chase has been diagnosed with a chronic tic disorder, which is more commonly known as Tourette Syndrome. This is a neurological disorder, characterised by repetitive, stereotyped, involuntary movements and vocalisations called tics. It is highly unusual for the disorder to appear at Chase’s age. He was 12 when the first signs appeared and has just had his 13th birthday. Chase has both complex motor tics and complex vocal tics. This means his body is constantly on the move and he is saying things that would normally be totally unacceptable to Chase, his family, or society in general. To give only the slightest understanding of what this is like for Chase, the tics are likened to an involuntary action such as the hiccups or sneezing, but continuous, no matter how much you want them to stop. This has left Chase feeling physically exhausted, frustrated, embarrassed and emotionally upset knowing the effect his actions and words will have on people around him, but which he has absolutely no ability to control.

At present Chase requires constant care from Mum to attend numerous medical appointments and to give him time to adjust to living with his tics, meaning Krystal has had to give up her full time position as an early childcare teacher. This is putting a financial strain on the family at a time when the stress of learning more about Chase's condition through ongoing tests, and working out how they will live with it, are all consuming.

You can find out more about Chase's journey so far by following the facebook page Krystal has set up to update people on the experience they have had.

Go to https://www.facebook.com/takingontouretteschase

Many people in the school community have asked how they can help. The family have not wanted to ask for financial support, but this has now become a last resort as government agencies have been unwilling/unable to provide the support needed by the family, as Chase’s condition is not considered to be one which requires home care. Unfortunately, at this stage, Chase’s frequent medical appointments and inability to attend school make it impossible for Krystal, as a solo mum, to maintain her job. We are asking people to join us in supporting the family to get through this trying time, especially the next few months until they are able to settle into their new normal, when Chase is able to return to school full time and Krystal can return to work and is once again able to support them all.

If you are able, it would be great if you could click the option "Add to plan" below the "donate now" button. Ideally, we would love to get a number of people who can commit to donating a small amount (perhaps $10 or $20) each week for a few weeks until Krystal, Chase and his 2 siblings are through the most difficult part of this challenging journey.

Often support for people in difficult situations fades as time goes on. By donating this way we hope to ensure they have the support they need until Krystal is once again able to support them all.

If this is not possible for you, please consider a one off donation at any time this page is running.