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Emily Walsh is raising money for UK Infantile Spasms Trust (UKIST)
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London Marathon 2023 · 23 April 2023 ·

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

As you may be aware our darling Marley suffered a stroke at birth and then in October 22 unfortunately he started having a significant amount of spasms. After a stay in hospital he was diagnosed with Infantile Spasms. He is still undergoing treatment for this which will (hopefully) stop his Epilepsy episodes. He is such a fighter and is developing unbelievably well considering his condition.

I'm planning on using his strength, determination and smile to get me over the finish line. 

I have decided to raise money for UKIST. The UK Infantile Spasms Trust (UKIST) provides a vital network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. This is a serious seizure disorder, and unless it’s recognised and treated early, the prognosis for affected children can be very poor. 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. By supporting UKIST, you will make a real difference.This charity has already been a great support with the many questions I have had as an anxious Mummy.































































































































































































































































































































































































































































































































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Donation summary

Total
£1,387.00
+ £281.50 Gift Aid
Online
£1,387.00
Offline
£0.00

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