Scotts Hair Do

Danielle Clark is raising money for Our Brave Knight

Scott’s Hair Do · 29 August 2021

We started this journey in September 2013, after our own Brave Knight was 36th in Europe to be diagnosed with XIAP Deficiency. Unfortunately he lost his battle in May 2014. So as you can see this is a very rare condition, it's a genetic condition that only effects boys. It stops the immune system from working properly, so a common cold can become a matter of life or death. As well as the condition, the treatment for it is also life threatening. We want to raise money to fund any research to stop the treatment also being life threatening.

Story

We started our journey in September 2013 when our own Brave Knight, Cameron, became poorly. He was 36th in Europe to be diagnosed with the rare genetic condition XIAP Deficiency. Unfortunately he was unable to keep fighting and lost his battle in May 2014 after lots of treatment at Great Ormond Street Hospital and a bone marrow transplant. Since that day we have vowed that we would raise as much money as we can to fund research into the condition and treatment to help other boys and families across the world.

Donation summary

Total
£140.00
Online
£140.00
Offline
£0.00

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