Anna's Story


Anna was born on 9th February 2011 and she completed our family.

 

Anna was a healthy, happy baby of almost one year old when she became ill on 19 January 2012. She had a seizure out of the blue which didn't stop, and she was taken into intensive care.  No one knew what the matter was and she underwent so many tests.  She was so brave - always smiling at the doctors and nurses and charming everyone who met her with her beautiful smile and spikey hair! 

On 16 March 2012, 8 weeks after that first seizure, Anna was diagnosed at Great Ormond Street Hospital in London (GOSH) with Alpers' Disease, a rare Mitochondrial Disease.  It was such a relief to have a diagnosis but the worst news was still to come.  There is currently no treatment, or cure, for Mitochondrial Disease.   All that could be done was to keep her pain-free, comfortable, happy and safe.  We spent every minute by her side and she knew how much she was loved.  Anna died on 1 April 2012, just 2 weeks after her diagnosis and only 10.5 weeks since the whole nightmare had begun.

 
Anna received wonderful, loving care in her last few weeks of life at Great Ormond Street Hospital, for which we will always be so grateful. The entire team at GOSH made what was such a difficult time for Anna, and us, much easier to bear, and we owe them so much.  The medical care she received was second to none but it was the love that we all received that made the hospital stand out so much for us.  We will never forget that kindness.

The Mitochondrial Research Group at GOSH is working to identify the genetic causes for Mitochondrial Disease and to identify possible treatments. Without its expertise, Anna's diagnosis would never have been possible. We have asked for all donations to Anna's Brighter Future Fund to go to the Mitochondrial Research Group so that in the future there may be treatments or even a cure available for this most cruel of diseases. 

 

We will keep fundraising until a cure is found.

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Our Aim

In Anna's memory we want to raise awareness of Mitochondrial Disease and we want to fundraise for research so that a cure can be found.