Harry's Journey

Harry's Journey

Harry George Whitley was born on the 19th April 2003.He has a very rare epilepsy syndrome called 'Migrating Partial Epilepsy of Infancy' (MPEI).  The purpose of this site originally was to record his brave journey with this condition from birth, and how his parents, siblings and extended family learnt so much from him.  My other aim for this site was to gather together all the children who have the same condition in the hope that we could support each other, and learn from each other's experiences.  I  also hoped  it would help other parents who are coping with their childs seizures, wondering what on earth is going to happen next.  I made contact with Cooper's Mom firstnwhen Harry was new born and she was such a comfort for us as a family.  Cooper is six months older than Harry and until recently they pretty much followed the same path.  Have a look at 'Harrys Friends' to see all the other children with Migrating Partial Epilepsy. 

Over the years this site has become so much more than i ever intended. The friendships between the parents are so strong and the support we draw from each other keeps us going when all else fails. For me, Harrys mum, it has been an amazing journey, an intense learning experience and this year it also became the saddest time of my life. Sadly some of the children on this site have now passed away, and they are listed below.

PLEASE ALSO FEEL FREE TO REGISTER WITH http://health.groups.yahoo.com/group/MPEIparentsupportgroup/ IF YOUR CHILD OR SOMEONE CLOSE TO YOU HAS BEEN DIAGNOSED WITH THIS CONDITION, OR YOU FEEL THAT WE CAN HELP YOU WITH INFORMATION TO REACH A DIAGNOSIS.

In December 2006 little Daniel passed away. He had suffered with pneumonia and was just to tired and sick to fight anymore. His parents were with him and he slipped away peacefully. 

In February 2007 little Oskar passed away. He had been ill for several months with stomach problems and was ubable to tolerate food, water or medicines. He passed away at home with his mummy, daddy and big brother Jamie.

On 20th January 2008, Molly passed away peacefully at Claire House childrens hospice in her Mummy and Daddys arms. She had been ill for some time and spent time in ITU and HDU at Alder Hey, before she was moved to the hospice.

On  March 15th 2008 Rylie passed away peacefully with her family around her. She had been ill for two weeks and was very poorly. Her Mummy and Daddy knew she was tired and that she couldnt fight anymore and they made the brave decision to allow her to pass away peacefully with no more medical intervention.

Our thoughts and love are with their parents as they face the difficult days ahead.   Oskar and Daniel were beautiful, brave boys who fought a hard battle and now they can both sleep peacefully. 

On the 29th April 2008, our little Harry Bear decided that he was too tired to fight anymore and peacefully fell asleep in his Mummy and Daddys arms, surrounded by his loving family.  He has now gone to join Oskar, Daniel, Molly, Javier and Rylie. They were all beautiful, brave children who fought a brave battle and now they can all sleep peacefully, and play with each other. We are heartbroken and love and miss Harry more than words can ever say. Harry was just the best little boy ever and his bravery never ceased to amaze us. We are so proud to have had him as our son and he will live forever in our hearts and minds.  Sleep tight beautiful brave boy, rest in peace until we come to join you. Broken hearted Mummy and Daddy Bear.xxx

Some pages of this site have music in the background. The songs mean alot to us as a family and were played at Harrys funeral which was attended by 250 people, a fantastic tribute to someone so young. He touched so many people in his short life. One friend wrote recently that Harry was like a shining star - rarely seen, remarkable and unique. He lit up all around him briefly, but with brilliance -  and when things get dark, the memory of him will not fade. This is how we like to remember him.

Please continue to sign Harrys guest book. Please note that this website does not store your email address and i would love to contact some of you directly. Please feel free to email me on denise.whitley@msn.com and i will reply

What The Condition Means For Harry

This condition meant for Harry that he couldnt use any of his limbs, he was never able to move or hold anything. He had no head or trunk control. He lost the ability to eat and drink when he was 10mths old and was then fed through a tube into his tummy. He was registered blind and also had microcephaly.  He had relentless seizures which were never able to controlled. These seizures could reach more than 150 on a bad day. Towards the last few years of his life his lungs got worse and he had frequent episodes of pneumonia. He also developed scoliosis which further comprimised his lung function. From January 2008 he was on continuous oxygen and slept for most of the day, until he passed away in April.

What a brave soldier our Harry bear was.