Katies 5km for Tourettes Support NI

Hi my name is Katie, and, well 5km might not seem a lot, but being honest I am seriously unfit. So the effort I am putting into this run is huge for me, and a real challenge. I will no doubt suffer on my way around, but I will do it! The drive behind this is to raise money for activities for children with Tourette’s Syndrome (TS) and this is why…

 

On 6th July 2020 my clever, beautiful daughter Tilly, woke up with really extreme movements. Throwing her head back repeatedly, with no rest or break. After an extended hospital stay and numerous tests, I was told Tilly had Explosive Onset Tourette’s Syndrome. Normally it would take a year for a diagnosis but Tilly’s case was so extreme it didn’t take long to identify, and our lives completely changed.

 

To cut a long story short 18 months later, Tilly is still unable to go to school. She now uses a wheelchair to get around safely and has extreme problems with eating. All of this was a very steep learning curve for both me and Tilly. My knowledge of TS was based on the stereotypical media portal of the disorder, not the true facts of how much this would impact our family.

 

However, Tilly is not alone because across the world there are teenage girls presenting with these extreme cases, in much higher numbers than before COVID lockdowns started. Research is looking at this being one of the impacts covid has had on young people. There is very little known about TS and because of this are next to no support services, let alone safe places for children and teenagers like Tilly to relax, play and be themselves.

 

Back to the 5km- I am hoping to raise money to support a newly formed charity that will provide activities for children with TS in Northern Ireland where Tilly and I live. The charity has been formed by mums who just want our children to be able to have some fun without the worry of being excluded or misunderstood. We do not get paid and have no outside funding, so the money raised will go straight to activities which will have a positive impact on the children’s self-esteem and overall wellbeing.

 

Any donation would be really appreciated and go directly towards offering a safe place for children like Tilly to grow and enjoy themselves.

Thank you to everyone for all your support so far. Updates on my run to come! 

 

Love Katie

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