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a letter from poppy's mum

Poppy, now five, was diagnosed with epilepsy when she was just two years old.  In this open letter Poppy’s mum, Helen Jackson, writes about her daughter’s diagnosis, the new medication that answered her prayers and how Epilepsy Society’s research could help more families.

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Dear supporter,

Poppy gives a thumbs up with her mum, Helen JacksonThis Christmas will be very special for my family so I hope you don’t mind, but I wanted to share with you my daughter Poppy’s story in the hope that together we can give every family affected by epilepsy a happier Christmas.

By the time Poppy turned 2 my husband and I knew that, although she was very beautiful and active, we could no longer ignore her lack of development. Poppy was prone to ‘day dreaming’ and had started having lots of unexplained trips and falls. These strange episodes began making her double-over but remained a mystery to the medical profession. Within months, twenty to thirty of these unexplained episodes were occurring each day, dominating our little girl. They began within a few minutes of her waking each day. You didn’t know exactly when it was going to strike but you never had to wait more than a few minutes. It looked exactly like an invisible person was angrily pushing my 2-year-old from behind. If one struck whilst she was eating, her head would hit the table hard. Other children (and parents) would get upset at the unexpected, unexplained violence. Poppy didn’t know what was hurting her and nor did we. It broke our hearts when she looked to us for explanation and sometimes she even thought it was us that had hurt her.

By the time a diagnosis came 9 months later we were relieved to finally get some answers. Poppy had a rare and stubborn type of childhood epilepsy. Poppy’s ‘day dreaming’ was actually absence seizures and the violent episodes were drop seizures.

Very few people seem to know that epilepsy comes in many different forms (I didn’t). I didn’t know that epilepsy can affect memory function, nor did I know how devastating it can be to a child’s development. I didn’t know that seizures can look like innocent staring episodes. For that Poppy, I will always be sorry.

The diagnosis was followed by 5 long and disappointing months during which a prescribed anti-epileptic drug appeared to have no effect. We had padded everything we could in our house but worried constantly that today could be the day she got a head injury or lost an eye. Every night, as Poppy fell asleep, I promised her that I would make the attacks stop soon. Then I would pray for someone to help me.

Then in July 2013, doctors suggested introducing a second, newer, medicine alongside the existing one. Despite the serious risks presented by possible side-effects, we went ahead. Then finally, my prayers were answered. The seizures stopped. In the weeks that followed it was like a mask had been removed, revealing our daughter. For the first time we could see Poppy’s true personality.

Now 5 years old, Poppy has already lived an extraordinary life and I’d be lying if I said we always find living with her developmental problems easy. But I am so proud now to be able to say that, not only is my daughter beautiful and active, she is also funny, chatty, loving, a playful sister, and she is finally able to learn. Without the medical advances in recent years, the drugs that have changed our lives would not exist, which is unthinkable. Poppy is winning her battle. Please join the fight against epilepsy by supporting Epilepsy Society this Christmas.

I know there are other mums out there still looking for their miracle, mums who need help to deliver on their promises right now. Just seeing the faces of the medical researchers on Epilepsy Society’s website makes me cry. I think it’s because I’m so relieved someone is trying to help.

On behalf of my family I would like to thank you for supporting Epilepsy Society. Your donation could lead to medical advances that allow more families to have the kind of Christmas that we are looking forward to.

Merry Christmas to you all!

Helen Jackson

How to donate to our Christmas appeal

You can donate online or by phoning 01494 601 410.

Poppy has designed this Christmas card for us. Thanks to successful changes in her epilepsy medication, she has recently developed the strength and motor skills to write, cut and stick.

This card is available in packs of 10 from our online shop

Support us and help other families like Poppy’s this Christmas.

Family photos