Neve's Story

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Neve was born in May 2008 and was a normal, healthy baby girl with beautiful eyes and the most amazing amount of jet black hair! As seems the case with many Dravet Children, Neve experienced her first seizure a few days after her four-month vaccinations. We were at our godson’s christening and Neve started to jerk uncontrollably. Her seizure lasted 25 minutes. She was rushed to hospital and a week, and three lumber punctures later (to rule out meningitis), we were dismissed with the diagnosis that it was probably just a febrile convulsion caused by an unknown virus.

RedOutfit

Two months later, Neve had her second seizure and so started the full introduction to the world of hospitals, consultants, no sleep, uncertainty, fear and standing at the end of the drive in the middle of the night listening for the sound of the approaching ambulance.

Over the next 12 months, Neve experienced many different kinds of seizure, from short absences to 'grand mals' lasting an hour and a half in the trauma room. On Mothering Sunday, 2009, Neve had 8 seizures in 12 hours. A terrifying experience and a Mother's Day to forget. Neve was put on a cocktail of different drugs to control her seizures but nothing seemed to be working. In May, Neve suffered another terrible cluster of 8 seizures and spent the whole of her first birthday week in hospital. The doctors were at a complete loss as to what was wrong and we felt completely helpless. We were told that any seizure lasting more than half an hour can result in the brain damage and by this time Neve had had over 40 seizures.

In September 2009, one year on from her first seizure, Neve had an hour long seizure and after every available drug had been pumped into her, was put into an induced coma and intubated. She was transported to the PICU (Paediatric Intensive Care Unit) at the John Radcliffe Hospital in Oxford. The Paediatric Neurologist there finally suspected Dravet Syndrome and 3 months later, we finally got a diagnosis.

Our consultant broke the news to us and it was like being mowed down by a truck. We were told that there is no cure, that the mortality rate is 15-20%, that Neve would continue to have seizures, that her development would slow and even regress, that she would probably have an IQ of less than 70, that she may not walk, and that she would need to be cared for throughout her life!

It had been like being at war for 15 months, battling a mixture of emotional, physical and mental torment that only people who have been through it can really comprehend. To face the reality that our lives would be like this forever was tough to process and several bucket-loads of tears were shed as we came to terms with the loss of the little girl we thought we had.

 

Since the diagnosis, Neve has been put on the optimum drug combination of Stiripentol, Epillim and Clobazam. However, she still continues to have seizures. She is fortunate not to have daily seizures but when she does they are usually life threatening and we live in fear that one day it might just not stop. Seizures come on without warning and a slight rise in temperature from something as simple as a runny nose can result in a trip to Intensive Care. As a result she cannot attend nursery or mix freely with others for fear of her becoming ill. And because so few professionals have ever heard of Dravet Syndrome any trips too far away from home and our local hospital are unthinkable.

Neve has recently started a special diet called the Ketogenic Diet. This has been made possible by a fantastic charity called The Daisy Garland who raise money to train specialist Ketogenic Dieticians and we are praying that this will help to control her seizures.

Anyone who meets Neve is blown away by how beautiful she is. But its not just her long eye lashes and cheeky smile that wins them over. She has a special way with people - we affectionately call it being ‘Neve’d’ and she can win over anyone in a heartbeat. We have been overwhelmed by the love and support Neve has received and are grateful for every day we have with her. We have vowed to do everything that we can to ensure that her life is as happy and as fulfilled as possible. We dare not look too far ahead and for now are simply taking one day at a time.

 

Believe

"Ever wondered how strong you could be, looking for the light, straining to see;

Alone in a battle, which cannot be won, improving the outcome, you step one by one;

Enriching our lives with happiness and grace, what I would give, to take her place;

A silence, a squeak, you breathe once more, when will it end, who knows for sure;

Control is dispelled as it starts over again, hearing the sirens, preparing to leave;

She'll do the fighting, be strong and believe." - Neve's Dad (19 Nov 2009)

 

For all the latest news on Neve, please click here or visit her new Facebook page.

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