In September 2001, my husband and I woke up by strange noise.
We rushed to our eight -year -old daughter’s bedroom to find that she was suffering from a seizure. When she came around her, she had no idea about anything.
We have seen it on the GP award urgently on the morning of that day that gave us a referral letter at a sealed envelope to transfer to the hospital.
I will always regret not reading that message.
Becky was seen in the hospital by a recorder who told us not to worry because it may have been just a migraine, and he told us to give it Paracetamol if that happened again. They said they would not be able to investigate more, unless these episodes become “regular and frequent.”
Over the next two years, Becky had a handful of night seizures, each of them apart for several months.
For
Last year, on March 10, we lost our beloved colleague Sarah Whitley. Sarah was a great journalist. She was MetroWriter of the Pillar of Parenting and Motherhood and a valuable member of our first office and opinion office.
Sarah died at the age of 39 from Sudab – an unexpected sudden death in epilepsy. About 1,000 people are believed to die of epilepsy reasons.
With the support of the Sarah family, Metro It is the collection of donations for a company of two very important charities: Sodib’s work and Epilepsy.
From March 10 to March 26, which represents the Purple Day (epilepsy awareness day), we will operate a series of first features and pieces, and to raise awareness of epilepsy and Sindb.
Sarah was very amazing helping others to share their experiences; The narrator was born and we hope that you will be proud of it in this series, while the money collected in its memory.
This was very concerned, but since it was not “regular and repeated”, we thought there was nothing we could or should do.
When they started to happen at monthly periods in January, February and March 2004, we saw a different doctor who agreed to refer Picky again.
Impressively discovered, we discovered later that the referral was incorrectly trilogy. Instead of a neurologist, Becky saw a general pediatrician who diagnosed migraines and prescribed medications for their treatment.
They mentioned that even if you are right because it suffers from epilepsy, as I now come to doubt, anti -activity medications will not be prescribed because they were approaching puberty.
But you do not worry, the pediatrician said: Becky could not harm any of the seizures.
Becky then told him about the regular lapses of attention and visual disorders that she was suffering from at school (which we were clearly seizures of absence).
The pediatrician was still insisting that he was not the epilepsy but he agreed to EEG “to prove an error.” Until then, he repeated that the Nuba control medicine would be out of it, and that if it was already taking epilepsy medications, he would have taken them out because of her age.
We later found that this information is unfounded and very dangerous.
EEG did not indicate a problem and becky was referred to MRI, whose results were due on May 6. Two days ago, on May 4, 2004, our lives changed forever.
Roger found that Becky was lying on his face down, so he discharged her hair but she did not move. He was withdrawn and knew immediately that something was seriously wrong.
He shouted for the sake of Ren 999 who spoke to us through CPR but in the heart of our hearts, we knew that we lost it.
This was the worst day in our lives. Many of them are blurry, but I will never forget to say goodbye to Becky in the hospital and then conduct an interview with the police at home.
It was the police that called us a few days later to say that Becky died of an unexpected death in epilepsy (Sudab).
Sodib’s work
SUDEP Action provides major services for those affected by epilepsy and SUDEP.
They provide free support from the bereavement to those who lost a member of his family in front of SUDEP, and to advise and help sad families during the investigation process.
SUDEP Action is passionate about providing information about SUDEP to help reduce risk to those who suffer from epilepsy, as well as lead research to prevent future deaths.
You can donate SUDEP here
None of the doctors mentioned any of the doctors before. We heard that it was just a phrase that my sister, who was controlling epilepsy, controlled that she had conducted some research and found the charitable SUDEP procedures, which were, and still, a great support for us and many other murracted families.
We felt completely ignored by GP’s GP, registrar and pediatricians – none of them appeared to take us seriously or have any knowledge of the epilepsy.
We requested Becky’s medical notes before her inquiry and the message written by GP for the hospital after the first Becky seizure mentioned “IMO (in my opinion) migraines.”
I have no doubt that the wrong diagnosis of Becky was only dependent on these words in hand -written GPS note.
Since the death of only 11 -year -old Becky, I discovered a lot about SUDEP, including the fact that about 80 % of all epilepsy deaths can be avoided, which is destroyed for us.
I am enthusiastic that all those suffering from epilepsy, parents and introductions of children with epilepsy, should be given facts about the SUDEP danger very early so that they can make educated options about their lifestyle to reduce any risk significantly – and this can be reduced.
I think many doctors are withholding this information for fear of “disturbing” the newly diagnosed people with epilepsy but should be spoken of the danger of Sudep publicly in the same way that most people realize that you can die if you have asthma.
I have no doubt that our lives will be a big difference if anyone has mentioned the SUDEP risks while Becky was alive. I prefer to be upset with bereaved.
We will never know how Becky’s future seemed, but I know that she will definitely be the most care of our six -month -old granddaughter.
Beavy Becky was a very bright and happy girl with a wise head on her young shoulders. She was a loving sister and a sincere friend who also enjoyed her own company, whether she was writing poems, drawing or creating a “craftsman” in her bedroom.
For us, everything changed on that day in May 2004, and I know that there will always be a Becky -shaped hole in our lives.
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