Story

Hello, my name is Penny. Thank you for visiting my Just Giving page.   I will be running the London Marathon 2011 in memory of my wonderful son, Darren.  All the money I raise will be split between 2 charities; both are very dear to my heart. They are ‘Chestnut Tree House’ children’s Hospice and ‘QEII School’ both are in West Sussex.   I have required the services of both these wonderful places in the last few years  - so let me tell you more about why I am doing this.    QEII is a small special needs school for pupils with severe, profound and multiple learning difficulties. This was the school  Darren attended.  The staff have a wonderful ethos and help all the pupils to fulfill their potential no matter what their needs, and he learnt so much from the caring staff.  The dedication that is put into the school from individuals makes QEII unique.  I have seen many children in the last 13 years develop and stride forward and the achievements I have witness are outstanding. Also I am very proud to be a part of the team, it is a privilege to work in such a wonderful place.    Chestnut Tree House is the only children’s hospice in Sussex.  It provides families with children that have life-limiting conditions, respite support and end of life care.  It’s a home from home environment with such devoted caring staff.    In 2004 Darren caught a virus that left huge effects on his already fragile condition.  He lost many skills, such as speech and mobility.  He could no longer walk without support and his epilepsy got much more severe, so much that he had to have a Vagal nerve stimulator implant put in to help control his daily seizure activity.  After months of care in hospital we came home to our new lives and new home.  We had an extension built to accommodate all of Darren’s needs and equipment to provide the constant care he needed.  Things became very difficult and at this point and the services of Chestnut Tree House became available. We were very apprehensive but walking through the door for the first time and being made so welcome it didn’t take long before our first respite weekend went ahead.  We all stayed together as a family as this was so important not just for Darren but for his sister too. It was a difficult time for all of us.  As time went by our visits became so valuable, it gave us a chance to catch up on sleep, sit and think and spend time with each other whilst Darren was being cared for.  The staff showed such empathy and dedication.  They helped make us strong and allowed us to recharge our batteries until the next visit.    In November 2007, Darren was admitted to hospital yet again, only this time he was not going to make it home.  We faced our worse fears. Again, Chestnut Tree House offered a place for Darren to be cared for in dignity and we could all spend our last few days together.  Family and friends were all welcomed, it was such a support network for us all.  The staff gave us the strength to get through the next few days and stay strong.  Nothing was a problem to them.  Still today they offer support through our difficult times.  Anniversaries don’t get any easier and the staff are never far away.  Their continued support provides us with the strength to continue our lives, as Darren would want us to, just like many of our special friends do also.  He would be very disappointed with us being sad forever!!!!!!    Being Darren’s mum, I miss him so much each day.  My heart will continue to be broken until we meet for our new journey at some time, but thanks to the marvelous staff at QEII School and Chestnut Tree House I have the support I need to continue each day and to support my lovely daughter Megan and the rest of my family.   This is why I am asking for your support, so that the staff at these wonderful places can help many more people, just like my family and me.    Thank you for reading my story - Penny.

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