A mum 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.
Mum Beth, 30, is hosting a fundraiser at Macclesfield Hospital on Epilepsy Awareness Day on Monday (March 26), to raise money for Epilepsy Action and research into the condition, and reach out to other parents of children with the condition.
Jack has Focal Epilepsy which can be triggered by tiredness. 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 said: “It’s very scary. It was happening for months and we didn’t know why, it was horrendous.
Beth, who lives on Park Lane with husband Daniel and Jack, added: “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 says Jack is responding well to medication, but is keen to share her story to reach out to other parents of children with epilepsy.
Beth, who works at Macclesfield Hospital’s booking centre, will be raffling off dozens of prizes donated by local businesses at the main entrance of the hospital where she will be joined by Jo Shuker, the epilepsy nurse at the hospital.
Parents of children with epilepsy are also invited to drop in and say hello.
Beth said: “We want to set up a support group for parents.
“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.”
Beth will be selling raffle tickets at Macclesfield hospital on 'Purple Day' , which is on Monday, March 26, in the main reception of Macclesfield Hospital.
Some of prizes include: Chris Hill Community sports sessions, three bespoke glasses; A selection of pamper products; two family night in hampers; Three night stay winter cottage holiday voucher; Avon hamper; Coop-macclesfield £30 of wine and chocolates; Bottles of fizz; £20 beauty voucher; M Markovitz Ltd Builders and Plumbers Merchants voucher £50; Bespoke hamper worth £50; Brand new cannon printer worth £70; Teeth Whitening voucher; Nail voucher @ nailtiques beauty box; 53 degrees north restaurant buxton worth £30; Flowerhouse @ Arighi Bianchi –plant; Subway-6inch meal voucher; Park tavern pub-bollington brewery craft beers box of four; Fun 4 all-spring pass childrens play centre worth £25; Sarah Richards beauty voucher worth £20; All about flowers alderley edge –bouquet of flowers; Beef eater – Springwood Tytherington meal voucher; Decadent hair- x2 blow drys; Black road stores –x3 £10 m+s vouchers; two for one wristband for blackpool pleasure beach; Simply Scrummy Macclesfield-£10 voucher; Chestergate cosmetics –mens travel bag and goodies; Chitty chitty bang bang theatre tickets @stockport plaza; Beautiful salon Macclesfield -£15 voucher; Dominos voucher worth £10; Superdrug –hugo boss laptop bag; Yankee candle-large candle worth over £20; Large lindt bunny worth £40; Bond street brownies-brownie easter pizza; Rachel Obbard make up artist-full make up and lashes; Pizza express meal for two for a three course meal and house bottle of wine; Fairways garden centre-prize to be confirmed; Silktown fryer chip shop-4 bags of chips; Dj’s barber shop-free mens haircut; Cheshire melts-handmade box of wax melts; Turkish Bay Restaurant Macclesfield-free bottle of house wine with any meal; Bollingtom leisure centre-prize to be confirmed; Namasthe restaurant Macclesfield-prize to be confirmed; open the door childrens play group-two tickets for storytime events; Rising sun Macclesfield food voucher-prize to be confirmed; This is between Macclesfield and buxton the donations made to the awareness day.
