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Going Purple

2 team members

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[p]On 1st June 2017 our lives changed for ever, what had been a simple trip to the park turned into a nightmare. Elaina had been asleep in her pram whilst we were sorting out the picnic, as we turned to check on her she was in the middle of what we know now to be a Tonic Clonic seizure, it lasted 35 minutes with respiratory distress and no form of response from her at all, she was just five months old. Once at the hospital Elaina had a further two seizures and needed life saving care, what followed were two weeks of daily seizures, Elaina being hooked up to machines, brain scans, MRIs, lumbar punctures, masses of antibiotics on the off chance that this was a brain infection or meningitis, two hourly neurological observations and a huge amount of dedication from the medical team at East Surrey Hospital and St Georges Hospital. She was diagnosed epileptic at some point in those two weeks and since then she has only ever had 8 days seizure free.[/p][p]The following months up to this today have included a lot of medical appointments, 14 hospital stays for uncontrollable seizures and feeding issues, Elaina being diagnosed with a chromosome deletion and her being put under the care of four different hospitals; Crawley Community Team, East Surrey Hospital, St Georges Hospital and Great Ormond Street Hospital. We have spent night after night watching machines, pacing up and down wards and desperately missing the five of us being together. At home we started to sleep in shifts to make sure she was cared for and was ok, we now have a go-bag for the hospital and Grandparents have taken Deven and Alex at the drop of a hat when needed.[/p][p]At our lowest point we found The Daisy Garland, an incredible charity that helps fund Ketogenic Diet specialists (an alternative diet that helps reduce seizures in some people) and supplies SATS monitors and Epilepsy monitors to children with difficult to control epilepsy but on top of that they support families across the country that are on the same journey as us, because they also have had the same journey. Sara and David Garland's daughter Daisy was diagnosed with a rare form of epilepsy, Dravet Syndrome, tragically three days before her 6th birthday Daisy went to bed and never woke up, she had passed away during the night from SUDEP (Sudden Unexplained Death of an Epileptic Person) since losing Daisy they have dedicated their lives to helping other families.[/p][p]We are #goingpurpleforepilepsyawareness, #goingpurpleforTheDaisyGarland and #goingpurpleforElaina on 26th March, Worldwide Epilepsy Awareness Day in an attempt to raise some money for this incredible family run charity so they can continue to help put equipment into the homes of families with children who have difficult to control epilepsy. These machines save lives every night, they are an early warning sign so parents/carers can seek medical attention for their children during seizures, they help to reliably inform paramedics and first responders of the current heart rate and oxygen rate of the children that are using them and they offer the family just that very small amount of comfort to know that they can sleep at night and their child will be as safe as they can possibly make them.[/p][p]Please consider donating or even better go purple yourself on 26th March 2018 and make a donation to help us raise awareness of Epilepsy[/p][p]Thank you[/p]
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Share their story

Event

Personal Challenge Date

26 Mar 2018

Charity

The Daisy Garland

The Daisy Garland

Supporters

11-Apr-2018

Shiela Avery

Fundraising and input Lots of love nanny and grandad Sasha xx

£145.00 plus £36.25 Gift Aid

28-Mar-2018

Hayley Arnold

x

£10.00 plus £2.50 Gift Aid

27-Mar-2018

Anonymous

Lots of love Catherine xx

£10.00 plus £2.50 Gift Aid

27-Mar-2018

Claire Widdows

Elaina xxx

£5.00 plus £1.25 Gift Aid

27-Mar-2018

Sarah Edwards

£10.00 plus £2.50 Gift Aid

27-Mar-2018

Scott

To a very special family who are trying to make a difference whilst facing adversity. Well done x

£15.00 plus £3.75 Gift Aid

26-Mar-2018

Sue Truss

£10.00 plus £2.50 Gift Aid

26-Mar-2018

Tom + Ciaran

Thinking of you all, always. Sending love your way! She is such a special little lady!! Xxx

£15.00 plus £3.75 Gift Aid

26-Mar-2018

Gail

With love from Gail and Peter and your friends at Rose Auto's

£140.00 plus £35.00 Gift Aid

26-Mar-2018

GAIL

With love from some members of MSCCC

£50.00 plus £12.50 Gift Aid

Emma Avery-Burtenshaw

Emma Avery-Burtenshaw

Michelle Avery-Burtenshaw

Michelle Avery-Burtenshaw