Toby's Story

I've been away for a while! The last four months have been a busy time during which I have planned for both the Norway 350 and South Pole solo. Important stuff, but trivial when compared to the reasons why I will completing these two treks. As many of you are aware, I will be raising awareness of, and for funds for, Soundabout.org.uk and Meningitis Now. It's important to give an insight into the critical and vital work both organisations do, and the support they provide. To achieve this aim I made a request to one of the parents of a young boy who was left profoundly disabled by Meningitis. The reply blew me away! I hope it will do the same to you.

Instead of listening to me, please read on and take some time to see into the life of Toby and his family.

Toby was born on 29 April 2008, Andy and I were thrilled, terrified and extremely excited all at the same time at the arrival of our first child, our perfect baby boy. He was born a very healthy 7lb 8 oz and thrived for the first 8 months of his life, Andy and I learnt ‘on the job’ as all first time parents do.

Our lives were turned upside down on the night of 30 December 2008. Toby had been unwell, with a heavy cold the days prior to this and we had even taken him to the local A&E the previous day as he was not himself. We were visiting family over the Christmas period so away from our local GP services. Toby was checked and sent home but then that night the devastation on Pneumococcal Meningitis and Septicaemia attacked our baby.

Toby was raced into A&E again and fought desperately for his life. With a huge amount of medical intervention he survived. We were transferred immediately up to The Evelina hospital in London where Toby spent over a week in Intensive Care and a further month in hospital back in Oxford after that.

Toby now has many challenges, he has Cerebral Palsy and is in a wheelchair. He has Cortical Visual Impairment, Hearing Impairment, Epilepsy and is non verbal. There are countless things that Toby can’t do but despite this he has developed hugely over the last 8 years in his own special way and is learning a little bit of independence. As parents we have had to come to terms with the loss of our perfect healthy baby and become ‘an Army’ for our little boy that survived this cruel disease. We as a family, and Toby, have to fight for everything, nothing in the world of Special Needs is easy or straight forward and EVERYTHING comes with a huge price tag.

Meningitis Now have however helped us enormously, when the words ‘Special needs’ is added to anything the cost rockets sky high and sadly the equipment that Toby requires is never ending and funding form the Government and Councils is ever decreasing. Meningitis Now have funded essential counselling for Andy and I, a wonderful off road wheelchair/bike trailer for Toby as well as helping with funds for our essential house renovation to enable Toby to live comfortably at home and be a part of the family. Most recently they also helped to part fund the payment of our Wheelchair Accessible Vehicle.

Toby and us have also been fortunate enough to get to know the wonderful team at Soundabout. They have known Toby for over 7 years and have provided much fun through music therapy. They help children express themselves and learn to communicate using their own sounds. They have given us the confidence to allow Toby to be himself and express himself and have a wonderful way of including all the family, not only parents but siblings too.

Toby is thriving in his own little way, through the help of these charities hopefully he, his friends and all those who are in similar positions to us will continue to do so.

There can be no finer endorsement than one given by those who depend on the help and support of these amazing charities, don't you agree.

Thank you for your time and expect regular updates on progress, awareness days, fundraising and more.