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My name is Sam, and I am the proud Mum to Daisy.  My beautiful daughter is 14 months old, and in August 2012, at the age of 9 months, she was diagnosed with Infantile Spasms.  Infantile Spasms, is a very rare epileptic disorder, affecting just one infant in 2,500.  Just to put that into context, most district hospitals in the UK will only have about one or two infants each year that are diagnosed with this condition.  The average GP would have to work for over 100 years before they would have an infant present to them with this form of epilepsy. 

This is our story.

I am a full-time working Mum, and live in Peterborough. I work as a Deputy Sister on a very busy Ward, at Peterborough City Hospital.  I am Mum, to not only Daisy, but also to Molly, who is 5.  My husband of 7 years, is Richard, who is a serving member of the Royal Airforce.

Daisy’s diagnosis with Infantile Spasms, has been a devastating one, for all of us.  To say we have had a difficult 6 months, would be putting it mildly.   Daisy is developmentally delayed, globally she functions at approximately 6 months of age, but her fine motor skills are severely delayed at 3 months of age.  She is unable to sit unaided, crawl, walk, or hold her toys long enough to play with them, but the one thing she can do is SMILE! And trust me when I tell you, that when she smiles, the whole room lights up! Unfortunately Daisy is not yet seizure free, but we hope that that will happen for her, sooner rather than later.  Through all of the ongoing uncertainty, heartache and stress, Daisy has remained a great source of strength to us all.  Despite everything she’s been through, she very rarely cries, loves a cuddle and just melts your heart when she grins at you.  She fights, and in turn, so do I.  She is my inspiration.  Daisy has had the most amazing care at Peterborough City Hospital and within the community.  She has been blessed with an incredible Consultant, Community Nurse and Health Visitor, who keep regular tabs on us all.  It has been from this, that the idea of fundraising was born, that and my family’s wish to find some way to thank all those have helped our precious baby girl.  So, with the help of my family and friends (most of them nurses too!) I have set about creating Pud’s Pot ( as Pud is Daisy’s nickname!).  Pud’s Pot has been designed to help raise awareness about complex childhood epilepsies, and allow us to fundraise throughout 2013, for two very worthwhile causes.  Any monies raised this year will be donated equally to Roald Dahl’s Marvellous Children’s Charity, who help care for and support children with brain injuries, epilepsy and blood disorders and the Peterborough Children’s Community Nurses, who have taken such amazing care of Daisy and been such a support for us as a family.   

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