UKIST would like to say a massive thank you to our fab four – Kylie, Kerry, Joe and Amy – who all completed the LLHM on Sunday 6th April on behalf of the charity. Our trustees Sue and Louisa had a great time manning the cheer station. Here are the stories of why our runners chose to support UKIST.
“Our son started having seizures in November 2022, aged just 3 months old. He was diagnosed with Infantile Spasms a few days later, after an inpatient stay at our local hospital and a transfer for an MRI and EEG in Southampton. He was weaned from medication but relapsed in May 2023 and again in Feb 2024. We are now weaning again with no further diagnosis as yet, though more investigations are pending.
The UKIST site was – and is – a constant source of help and information as well as much-needed support. In fact, without the information videos online we wouldn’t have achieved a diagnosis as quickly as we did, as we recognised the movements and immediately went to hospital.
I’m thrilled to take part in the LLHM to raise money for UKIST once again and although fitting in long training runs around work and motherhood isn’t easy (I’m a pretty slow runner), I’m so proud to be representing this wonderful charity and all our little warriors who go through so much.”
https://www.justgiving.com/page/kylie-evans-1732111871447
“Our son Arthur was diagnosed with IS when he was 4 months old.
We found UKIST and are so grateful we did! The knowledge, experience and support the team provide is amazing. Being able to go into conversations with Arthur’s Care team knowing we have the right facts and knowledge has meant we get the right plans in place for him. As parents it can be quite isolating navigating IS but UKIST have built a community of parents/carers that leaves you feeling less alone.
Bryn the Bear has been a great way to explain things to his older sister too!
I’m running the half marathon to give something back to make sure UKIST can keep providing such great support to families!”
https://www.justgiving.com/fundraising/kerrynash2025…
“In July 2023, our daughter Sienna was diagnosed with Infantile Spasms at just four months old. It was an incredibly challenging and uncertain time for both Sienna and our family.
”
Amy is one of our volunteer Trustees. She is running to raise funds for our annual residential weekend and family funday at CAFT, giving the families we support a much-needed break from hospital appointments and medical stresses.
