When Sophie Hughes laced up her running shoes for the Worthing Half Marathon on May 4th, 2025, she carried more than just her training and determination with her. She ran with the love and hope she has for her two sons, Hayden and Jake, who both live with the primary immunodeficiency mannose-binding lectin deficiency.

Her youngest son Jake was diagnosed at the age of 2 and then her oldest Hayden was diagnosed 6 months ago, aged 7, which was a shock to Sophie and her family as his conditions presented very differently to Jake’s. This is what spurred her on to train for the half marathon and she signed up at the last minute giving herself just 6 weeks to train for it.

Primary immunodeficiency disorders (PIDs) are rare conditions where part of the immune system is missing or doesn’t function properly. For Sophie’s boys, this means their bodies struggle to fight infections that most people would barely notice.

Sophie channeled her energy into something positive by completing the Worthing Half Marathon – 13.1 miles of determination to make a difference for families like hers.

Sophie’s initial fundraising target was £200, but the overwhelming response from friends and family has pushed her total to £830 – more than four times her original goal!

Each donation represents not just financial support for Immunodeficiency UK, but also recognition of the challenges faced by those living with these conditions.

Sophie explains why she chose to fundraise for us: ‘The clear and concise information booklets and leaflets have been the most helpful in teaching me all I know about PID, understanding the condition and best treatment options.’

Funds raised through Sophie’s challenge will help Immunodeficiency UK continue our vital work:

  • Providing information and support to individuals and families affected by primary immunodeficiency
  • Raising awareness of these rare conditions among healthcare professionals and the public
  • Advocating for improved healthcare services and treatment options
  • Supporting research into better treatments

Consider organising your own fundraising challenge for Immunodeficiency UK

Sophie extends her heartfelt thanks to everyone who supported her journey.

Posted May 2025