Anthony's fundraiser for UK Infantile Spasms Trust (UKIST)

Anthony Bretherton is raising money for UK Infantile Spasms Trust (UKIST)
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300km Northern Traverse (Wainright’s Coast to Coast route) · 5 April 2025

The UK Infantile Spasms Trust (UKIST) provides a network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. Infantile Spasms is a rare type of Epilepsy that occurs in young children, usually under one year of age. About 400 children a year are diagnosed in the UK. This is a serious seizure disorder because a child with Infantile Spasms has a chaotic brainwave pattern that may cause loss of skills and brain damage. Infantile Spasms can be very difficult to recognise and is often misdiagnosed as colic and reflux, or startle reflex. Unless it’s recognised and treated early the prognosis for affected children is very poor. By supporting UKIST, you will make a real difference. The charity has three clear aims. First, we’re focussed on improving awareness of the symptoms of Infantile Spasms amongst the medical profession and the public - because early diagnosis is key. Second, we provide a vital network of support to parents and carers with children affected by Infantile Spasms. And third, there more we know, the more we can do, so we’re also supporting the advancement of clinical research into Infantile Spasms.

Story

My youngest son Sam was diagnosed with infantile spasms (which is an early form of epilepsy) at just 5 months old, experiencing multiple seizures each day. This condition often goes undiagnosed, leading to severe developmental issues. Thanks to the incredible care he received at Preston hospital, my son has been seizure-free for 6 years and is now a happy six-and-a-half-year-old.

I am participating in the 300km (192 mile) Northern Traverse (Wainwright’s Coast to Coast route) on April 5th, 2025, to raise funds for UKIST. This is a non-stop race starting in St Bees, Cumbria and finishing at Robin Hoods Bay, Yorkshire. My target is to raise £1,000 to help ensure that other families receive the support they need during such challenging times. By supporting UKIST, you will make a real difference in the lives of those affected by infantile spasms.

The UK Infantile Spasms Trust (UKIST) plays a crucial role in supporting families with children affected by this rare seizure disorder, also known as West syndrome. This serious condition requires early recognition and treatment; otherwise, the prognosis for affected children can be very poor. UKIST offers a lifeline to anxious parents through its online community and collaborates with medical professionals to raise awareness about this little-known condition.

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Donation summary

Total
£965.00
+ £210.00 Gift Aid
Online
£965.00
Offline
£0.00

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