Running for Research

Tracy Eke is raising money for Pcdh19 Alliance
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Perkins Great Eastern Run 2019 · 13 October 2019 ·

Pcdh19 Alliance
RCN 454020102

Story

I'm running my 1st half marathon now in Rugby on 27th October 2019 as the Peterborough Half Marathon was cancelled at the last minute.

I'm part of Team Freya, racing to raise money to support research to help children living with PCDH19 Epilepsy.

PCDH19 Epilepsy is a disease with a wide spectrum of severity
in seizures, cognitive delays and other symptoms. It is caused by a mutation of the PCDH19 gene on the x chromosome, and disproportionately affects girls.  Males with the mutation, who will be largely unaffected, will pass the mutation onto 100% of their daughters and none of their sons.

My great niece, Freya, was born with Pcdh19, but no-one knew
this until at just 9 months old she suddenly started having seizures, one after another after another.  

In the blink of an eye, we had to see her wired up to various tubes in hospital to help her breathe, while she underwent a whole host of tests as the doctors struggled to diagnose the problem so they could give the correct treatment.

It took over a year to finally diagnose Pcdh19 Epilepsy and that was thanks to a neurologist at Bristol Children’s Hospital having recently read a research paper on the condition.

And that’s the thing about Pcdh19 Epilepsy. It’s not often diagnosed
initially because it’s not as well known as other types of epilepsy. It is now suspected that 1 in 10 girls that begin having seizures before the age of 5, may have PCDH19 Epilepsy (source: https://www.pcdh19info.org/).

This is why it is important to both raise awareness of the
condition to aid swifter diagnosis, and support dedicated research to develop effective treatments, and ultimately find a cure.

Thanks for taking the time to visit my JustGiving page.

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