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Tayla-Jade's fundraiser for UK Infantile Spasms Trust (UKIST)

Tayla-Jade Nolan is raising money for UK Infantile Spasms Trust (UKIST)
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London Marathon 2027 - Saturday · 24 April 2027 · Start fundraising for this event

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

On 24th April 2027 I will be running the London Marathon. I have chosen to run for a charity called UK infantile spasms trust (UKIST).

In May this year our little Lily chops was diagnosed with Infantile Spasms (also known as West Syndrome) & it completely rocked our whole world. Infantile Spasms is a rare, serious type of seizure that affects babies & children under the age of 2.

We took Lily to the hospital 4 times before anyone took us seriously & we was told it was likely her ‘reflux’, after a week of waiting she finally had an EEG at Great Ormand Street hospital & was diagnosed.

Every seizure that goes unmedicated can cause irreversible brain damage. At this point Lily was having 3 seizures a day all lasting up to 15 minutes long. Thankfully Lily was diagnosed quite promptly, as unfortunately if left untreated the prognosis can be pretty poor.

Unfortunately due to the severity of the seizures it does mean babies & children often loose the milestones they had and can regress or become static resulting in a need for physio, which is exactly what happened with Lily.

After diagnosis Lily was started on an anti-seizure medication & a high dose of steriods. This was quite possibly the hardest & darkest time Ollie & I had ever faced. We completely lost our little girl & we wasn’t sure if we would ever get her back. Lily stopped interacting, stopped smiling & just slept. She stopped smiling on the 27th April & didn’t smile again until the 5th June. With endless google questions, Ollie came across a Facebook group - UKIST. The group is designed to create an online community for families who have all been affected by infantile spasms. We had access to hundreds of families who were all going through or had been through the same thing. Every question we ever asked (& there were a lot) was always met with reassurance that what we were going through was typical behaviour. They gave us piece of mind that we was in the thick of it all and there IS light at the end of the tunnel. They were without a doubt our lifeline💜.

UKIST also offers so much more than just an online community, they work alongside medical professionals to raise awareness for the condition, they also offer grants which can be used for private physio or for specialist equipment.

Lily is quite possibly the most incredible little girl I have ever had the pleasure of knowing & we feel so incredibly lucky that we get to call her ours. Lily is constantly happy regardless of everything she faces & she is truly and utterly obsessed with her big sister.

We don’t know what the future holds but we do know she is the most resilient child & I know she’ll achieve anything she puts her mind to.

Thank you for reading. Please share & donate if you can, it would mean the world to us all.

Love Tayla, Ollie, Leah & Lily xxx

Donation summary

Total
£5,124.55
+ £720.00 Gift Aid
Online
£5,124.55
Offline
£0.00

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