Sam hopes to help Fife’s epilepsy families sleep easy
14 May, 2017

Sam hopes to help Fife’s epilepsy families sleep easy

/ 6 years ago

Sunday (14th May) sees the start of National Epilepsy Week, and at Purple Caffe Fife we are very proud and excited to announce a new initiative that will hopefully benefit all of the families of children living with epilepsy in Fife.

Sam Shaw (12) hopes to raise enough money to donate a “Sleep-Easy” anti-suffocation pillow to every child in the region who has been diagnosed with epilepsy.

Sam, whose parents Niall and Jackie are amongst the founder members of Purple Caffe Fife said “I had my first tonic-clonic seizure about two years ago.  My Dad has epilepsy too, so we know about it (epilepsy), but it was only when I met Laura Mortimer (NHS Fife Paediatric Epilepsy Specialist Nurse) that we found out how many other boys and girls in Fife are living with the condition.”

“People in my school didn’t really understand what epilepsy was.  When I was having absences or focal seizures, they thought I was staring at them or following them, which upset me.  I spoke to my Mum and Dad and told them that I wanted to explain to my friends what was happening, so me and my twin brother Jack did a presentation to all of our classmates – Laura (Mortimer) came along and helped us to explain it too.”

“When Laura told us about all the children who have epilepsy in Fife, I wanted to do something to help, so I asked my Mum and Dad if we could buy the special anti-suffocation pillows for all the children (c.400) in Fife who would need one.  I suffer regular night-time seizures, and these are really dangerous – people can suffocate in their sleep and die.  We have done some fundraising and already have got enough money to donate our first few pillows to families who need them.  I’m really happy about this, and even more happy that we have Purple Caffe now.  There are already families meeting up to help each other and its interesting to meet new people and make new friends.”

Sam’s mum, Jackie said “Although epilepsy has always been part of our lives, through my husband having seizures, his epilepsy is well controlled, and so it wasn’t something we really knew too much about.  When Sam had his first seizure, I was really worried, especially as it took him more than four hours to come out of it.  We were worried that he might have suffered brain damage.  His seizure came without any warning – no ill health beforehand, just a normal midweek evening!”

“Although there don’t seem to be any serious effects, he has had difficulty adjusting to the condition and has suffered bullying at school because of it, which makes it so much worse for him.  We were so proud when Sam and Jack did the presentation at school – I was almost in tears watching them be so brave at such a young age.  It inspired me to want to help Sam and other children and families in a similar situation.”

“Sam came up with the idea of buying pillows, so he and I started doing tombolas and raffles to raise money – so far we’ve made enough to buy several pillows and are looking forward to making our first deliveries!  Purple Caffe Fife gives families in Fife living with epilepsy something positive – information, support, and hopefully a calendar of regular social activities.  It’s something that we’re really proud of, and the families involved all have such energy and positivity despite the challenges that they and their children face.  It’s an amazing thing to be part of, and to have helped to start up!  Now we hope to see it go from strength to strength.”

We are delighted to be able to help families in Fife get access to these pillows, absolutely FREE.  If you would like to apply for one of these pillows, please ask for a referral via the NHS Fife Paediatric Epilepsy Specialist Nurse, who will send you a referral application form, which you should complete and return to us here.

You can keep up-to-date with our meetings, fundraising events and other news on Facebook and Twitter.



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