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

Alice Goldhill is raising money for UK Infantile Spasms Trust (UKIST)
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12 half marathons in 2024

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

The UK Infantile Spasms Trust (UKIST) is a charity extremely dear to us, and was a total lifeline when our 3rd child, Daisy, was diagnosed with Infantile Spasms when she was 6 months old.

In way of support, I am undertaking a massive challenge in 2024, attempting to run a different 1/2 marathon every month for the whole year. I have been so intimidated by the prospect of this, that I am only putting this out here now, when I have 4 1/2 marathons under my belt!! The twelve 13.1 mile distances will be a mix of official races and solo efforts. Somehow this will be done around a busy job as a doctor and 3 young children (special thanks to my equally busy doctor husband, Herms!!)

I do believe it is all worth it though, if I can raise some money to support UKIST. Infantile Spasms is a potentially devastating form of epilepsy which can profoundly affect development and/or be linked to on-going seizure types. Early treatment is essential to give babies the best prognosis. Diagnosis is often missed and not recognised by medical professionals until a baby has presented a number of times.

Miraculously, Daisy has been in the small minority of cases who appear to have had no lasting effects from her Infantile Spasms. Whist some of this is undoubtedly down to good luck, the fact that she was diagnosed and started on treatment straight away was crucial. This is sadly not the norm.

Since 2020, I have been a Trustee of UKIST. I have been privileged to work alongside an team. The charity has three specific aims. Firstly, to educate health professionals and the public about Infantile Spasms. Secondly, to support families/children with Infantile Spasms. Thirdly, to encourage and fund research into Infantile Spasms.

As UKIST is a small charity, run entirely by volunteers, every penny donated goes directly towards these aims. This might be in the form of grants providing equipment and therapies to affected parents, funding a family fun day catering for children with special educational needs, or producing a medical education package to be rolled out nationally.

Please support my crazy efforts if you can. And if anyone wants to join me for a 1/2, there are 8 more opportunities to come!!

Donation summary

Total
£1,950.00
+ £477.50 Gift Aid
Online
£1,950.00
Offline
£0.00

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