With her friend's young daughter suffering from a rare form of epilepsy which means she has back-to-back seizures, leaving her struggling to breathe, a Hitchin mum decided to act.

Zara Tomazou's daughter, Erin, is 14 months old and has recently been diagnosed with Dravet Syndrome. As well as experiencing severe, frequent and difficult-to-control seizures, all people with Dravet Syndrome have complex needs - which can include difficulties with speech, mobility, eating and sleeping - and are likely to require 24/7 care for life.

"It's a devastating condition - the worst and rarest form of epilepsy," Stevenage's Zara said. "Erin has regular seizures, which was recently 11 in one day, resulting in yet another night in hospital.

"She suffers with myoclonic jerks - sudden, brief involuntary jerking of muscles. This causes her to lose control of her head and, being only 14 months old, she can't stop herself falling or banging her face. She has constant bruises and cuts all over her, but mostly to her face or head.

"The most devastating consequence of her condition is not knowing what seizure could be her last. Children with Dravet Syndrome have a one in five chance of surviving to the age of 10 - there is a 20 per cent chance of dying with every seizure and a very high chance of passing in their sleep. Words can't explain the devastation we feel."

Zara's friend Judy, who lives in Hitchin, began fundraising in July for a seizure movement detection alarm, which could potentially save Erin's life. Judy said: "It is an incredibly important piece of equipment for the family. The biggest cause of death in epilepsy is from SUDEP - sudden unexpected death in epilepsy. It's the biggest cause of death in Dravet Syndrome - responsible for nearly half of all Dravet Syndrome deaths."

Having surpassed the original £800 fundraising target, which enabled the alarm to be purchased, Judy has now set her sights on raising enough money to buy head protection for Erin, specially designed for children with epilepsy.

Zara said: "A massive thank you for the donations and help for Erin - it is so appreciated and has bought her such vital equipment."

To make a donation, visit gofundme.com/f/an-epilepsy-monitor-for-erin.