I'm cycling from Sittingbourne to Paris in memory of my beautiful nephew, Joshua and to raise money for Demelza house, a superb charity who have supported my brother, sister-in-law and family through the darkest of times.

Joshua was diagnosed with Spinal Muscular Atrophy (SMA type 1), at the beginning of March 2013. This is a condition that effects the nerves in the body. The nerves do not send the messages to the muscles to work. There is no cure and it is life limiting. It is a genetic condition and both parents have to be carriers to pass on the gene.

Unfortunately Joshua caught Bronchiolitis – a respiratory infection, and my brother, Lee and sister-in-law, Vicky, spent four weeks at Evelina Children’s Hospital (St Thomas’), in London with Joshua. Joshua was placed on a ventilator to assist his breathing. It became apparent that it was unlikely he would be strong enough to breath on his own as his muscles would have become weakened by the virus and dependant on the ventilator. Despite an attempt to use another ventilation method, Joshua was not strong enough, so Vicky and Lee decided to go to Demelza House to make him as comfortable as possible after the ventilator was taken out.

We were all able to be together as a family, with Joshua. From the moment we arrived at Demelza, we were made so welcome, and so at home. The staff were amazing. They seemed to have a sixth sense to know when to be with you and when to leave us to have some time alone. Nothing was too much trouble. They really cared, this was obvious from the start.

We feel lucky that Joshua gave us a whole day at Demelza, during which we were able to use just a small fraction of their amazing facilities. We walked around their enchanting garden, visited their sensory and music room, ate breakfast, lunch and dinner together. Demelza even arranged for professional photos to be taken and for his hand and footprints to be cast in clay. The photos and prints really do mean the world to us now. We were even able to give him his last bath, which was made so memorable.

Their support immediately after Joshua passed away was just superb. Our families were able to stay together whilst the funeral was arranged. We were totally looked after not to mention the free flowing tea, coffee and food. Even now they are continuing to support all of us in remembrance events and personal support for Lee and Vicky.  They even have a grandparents group for my parents and Vicky's.

Being able to undertake this bike ride, in Joshua's memory is really important to me. I want to make others aware of the brilliant work Demelza do and to help them continue to provide such support and facilities for those who need it most.

This is Joshua's story, but Demelza do much, much more, please visit their page to find out. Please, please help us to help Demelza to help other people in our situation and other children and their families with life limiting conditions.