I woke up one morning last week and as usual looked through my social media apps. The first page to greet me was a page dedicated to a lady with epilepsy, meeting her hero, Jessica Ennis-Hill. A wonderful inspirational story to wake up to.
The same week, my husband and I had undertaken a couple of bike rides in aid of one of our favourite charities and again our hearts had been warmed by the generosity of people, some of whom we didn’t even know. This started me thinking about the impact of giving, whether that be ones time, effort or hard earned cash and what a difference these things can make to people with epilepsy and their families.
Recently, having moved to Bristol, we have been trying to establish ourselves, make new friends, support Matthew; my son, aged 28 with uncontrolled epilepsy and to begin to find a new life. We want to enable Matthew to socialise, exercise, develop new skills, challenge himself and work towards an independent future living with epilepsy. We have been met by a wealth of generosity, support, kindness and friendship and our experiences have given us and Matthew great comfort and pleasure since we arrived.
One amazing example of generosity and giving came from an unexpected quarter.
Matthew, quite understandably wants to develop independence away from his parents, however, leaving him alone in the house can be quite unsafe, as he has clusters of seizures and can fall heavily and regularly. This over the years has proved difficult to accept and as a parent, to allow him time alone has proved challenging . We recognise however, the importance of Matthew looking after himself to give him confidence, even though that may mean he injures himself or is unable to stay safe.
I was discussing this one day with my oldest son’s girlfriend and I suggested it would be an idea to have some sort of security cameras, so that we can observe Matt at home whilst we were out for short periods of time. I had no idea though how to set this up!
It turned out that Kate knew a friend who might be able to advise us. This friend, Kane, unbeknown to her, had set up the charity AcquiredMinds with his friend, Sam. We found out that AcquiredMinds offers a forum for those who are struggling, with any form of brain injury or condition. When Kane learned of Matthew’s condition and the struggles we have keeping him safe, a package turned up on our doorstep, almost the next day. The parcel contained 2 NEOS cameras and an Alexa Show to set up our own security system! This would allow us to monitor Matthew while we were out, ensuring that if there was ever an issue we could race back home to offer assistance. Not only does this give Matthew security, but it allows his independence and offers peace of mind for us as his parents. The new system has given us a new lease of life and the flexibility to live our lives more independently of each other. It has also given Matthew the confidence to be alone and enjoy some new found freedom
This remarkable act of kindness and generosity, from someone we have never met, totally out of the blue, has made a real impact to our family unit, we can’t thank Kane and AcquiredMinds enough for their help.
Such is the power of giving.
Jane Riley, Francis Pollard and Matthew 😊