Mums unite to raise awareness of epilepsy
AMUM whose baby son suffers from epilepsy is inviting parents with similar stories to join her campaign to raise awareness.
Daniel and Beth Barber’s son Jack would regularly stop breathing and suffered from ‘vacant episodes’ before he was diagnosed with Focal Epilepsy in January, when he was 18 months old.
As a result he suffers from Cyanosis - where he stops breathing for short periods of time - and ‘vacant episodes’ where he appears to be daydreaming.
Beth, 30, who lives on Park Lane with husband Dnaile and Jack, said: “It’s very scary.
“It was happening for months and we didn’t know why, it was horrendous.
“It’s so debilitating, he can get very confused, it affects his memory an he gets distressed. He then sleeps for along time because of all the pressure. At one point he was having up to eight [seizures] a day so he was just sleeping all the time, and that’s put him behind in his development. It’s so hard because he can’t tell us if he has a headache or feels unwell.”
Beth joined forces with Jo Shuker, an Epilepsy nurse at Macclesfield Hospital, and Jo Beverley, whose daughter Halle also has epilepsy, to hold fundraiser on Epilepsy Awareness Day in support of Epilepsy Action.
She said: “A massive thank you for all the donations from Macclesfield, Buxton and Leek businesses who donated lots of goodies for the raffle.
“We raised £1,730 in total with the cake sale and raffle which is a phenomenal amount for Epilepsy Action and will help so many family who are effected by epilepsy.”
Beth is now keen to set up a support group for fellow parents, said: “When my son was poorly I felt like there was no one I could talk to about it, no one who had been through the same thing as me.
“But there are people out there going through the same thing, and it’s really important that we can support each other.
“It took me until January this year to get a diagnoses and it was quite gruelling.”
She added: “We met lots of parents [at the fundraiser] who dropped in to discuss their children’s epilepsy and it was so reassur- ing to talk to other parents so you know you’re not alone, it was great to raise awareness of the different forms as epilepsy and people don’t always respond to medication.”