‘Talk more about childhood epilepsy’: West Hampstead family’s plea at fundraising event months after toddler’s tragic death
PUBLISHED: 14:55 01 September 2020 | UPDATED: 08:46 02 September 2020
A West Hampstead family reeling from tragedy held a fundraiser last weekend to raise awareness of the risks of epilepsy in young children – after a toddler passed away due to complications from the condition during lockdown.
Pam McNally – whose great-granddaughter Holly Star Davis died aged just two years and four months old in April – held the event at her Sumatra Road home. She had been diagnosed with the rare Wolf-Hirschhorn form of epilepsy just three days earlier.
The aim of the fundraiser was to get people talking about epilepsy, and raise enough money to pay for ten “epilepsy alarms” to donate to charity the Epilepsy Society.
An alarm alerts parents as and when an infant has a seizure, so they are best able to get medical help as quickly as possible.
Pam said: “We raised nearly £700 to go towards the epilepsy alarms.
“It’s a little band that goes around the child’s wrist and makes sure their parents know they’re having a fit.
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“We thought if we could raise enough to get these alarms, well, we know it might have helped Holly.”
Holly’s little sister Penny, 22 months, was also diagnosed with epilepsy, and while her family worry, she is not deemed to need an alarm herself.
Pam added: “There are so many little signs you have to be aware of. It can be just the child goes very quiet. I want there to be more talk about epilepsy, and more people to know about it.”
On Saturday, four generations of the family sold cakes and raffle tickets, and had a tombola in Pam’s front garden to raise money.
“It’s been such a shock to us,” said Pam. “We just didn’t think it would get so bad for her [Holly].”
Due to the coronavirus pandemic, although Holly died on April 4, her funeral only took place in June.
The family know the dangers of epilepsy more than most. One of Pam’s sons, Stewart, died after suffering seizures in 2006. He was 36.
After Stewart’s death, Pam ran three 10k races through London to help raise money for the Epilepsy Society, which helps support families affected by the condition.
To help, visit justgiving.com/crowdfunding/hollystarslegacy
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