The outlook is fairly bleak to be honest and at some stage she is expected to have a major seizure and not pull through. This could also be at night while she is asleep, so she could die and no one would know until the next day.
I as her mother now need to get some specialist equipment which is heart monitors and a special alarm mattress that can detect when a fit is occurring in her sleep. Then I can deal with it and administer her with the emergency medication that she has to carry around with her at all times, plus getting the paramedics out to give her further emergency medicine to save her and get her onto oxygen straight away. Poor Erin has become quite a regular in the blue lighted ambulance runs of late. The equipment she needs is a couple of thousand pounds and is not available on the NHS. There is an Epilepsy charity that has the bed alarms but there is a waiting list for it. Erin's recent deterioration now means that the waiting list will probably be too late for her.
Watford general, Barnet general, Chelsea hospital and the Peace children's centre have all tried their best to help Erin. The specialists have tried her on every medicine, The Ketogenic diet, brain scans, E.E.G'S. Sleep Deprived E.E.G'S ETC..... Erin cant even have brain surgery as where most Epileptic sufferers have it in one part of the brain- Erin's Epilepsy is wide spread and covers the whole of her brain. This is her last and only hope. PLEASE PLEASE DONATE, THANKYOU.
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