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Karen Frankland avatar
Karen Frankland

Aimee's page

Fundraising for Dravet Syndrome UK

£13,525
raised by 97 supporters
Donate

Dravet Syndrome UK

We fund medical research & raise awareness to help families living with DravetSyndrome

Charity Registration No. 1128289

Story

Aimee May Frankland was born on the 29 March 2011.  From the off Aimee was eager to enter the world and literally just gave Mum, Karen, enough time to get to the hospital before she was born!

Aimee was a beautiful little girl and was loved instantly by all.  For Karen, John and William she made their family complete.

At the age of just 3 months old Aimee suffered her first prolonged seizure and ended up in the hospital for a week of investigations into the cause, however no cause was found.

Weeks and months passed by and the seizures came on thick and fast and they could be very different from each other.  Aimee had multiple episodes of status epilepticus, which are seizures lasting over 30 minutes.  At 7 months old Aimee ended up in intensive care after a prolonged seizure which lasted 3 hours.

In May 2012 Aimee was started on a new medication which improved her seizures and made them easier to control at home without emergency intervention.  Unfortunately Aimee also suffered from myoclonic seizures which are short jerks or drop attacks and these would come on every day and often resulted in bumps, cuts and bruises.

After a visit to Great Ormond Street Hospital in February 2013 Aimee was diagnosed with Dravet Syndrome, a rare and catastrophic form of epilepsy.

Unfortunately Aimee’s seizures picked up again in August 2013.  We believe that some of these were caused due to Aimee having pattern sensitivity which was confirmed after an EEG test.  Life with pattern sensitivity meant that Aimee was surrounded daily by many triggers for epileptic activity and being hard to manage life became a daily challenge.

On the morning of 5 December 2013 Aimee suffered a prolonged seizure which left her in intensive care.  Upon trying to regain consciousness later in the day she suffered a further prolonged seizure, this time even more severe.  Doctors fought to get it under control again for over an hour and eventually they stopped the seizure and Aimee was left in a coma.  Tragically Aimee was unable to recover and peacefully passed away on the morning of 9 December surrounded by her close family.

Despite all the hardship and injury caused by this terrible condition, Aimee was one of the happiest and most lovable children you could ever meet.  Aimee had such an adventurous spirit, full of fun and mischief and more energy than all of us put together.  Aimee loved her musical toys and could often be seen clinging on to her favourite teddy, Violet.  Aimee also loved spending time with her big brother William who in turn loved her beyond compare and looked out for her at all times.

Aimee loved being sung to and one of her favourites was Twinkle Twinkle, very appropriate as she was a bright shiny star, our very own SUPERNOVA!

In her brief life Aimee has taught us so much, to love unconditionally and enjoy life to the full.  Aimee will remain forever in our thoughts and our hearts.

Shine bright & sleep tight little angel x x x

In memory of Aimee we have set up this page to raise funds towards support and research into this catastrophic condition, in the hope that someday a cure will be found.  All donations will go directly to Dravet Syndrome UK.

Thank you all. 

The Frankland Family

 

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