Our world crumbled when our beautiful baby boy was diagnosed with Spinal Muscular Atrophy (SMA type 1), at the beginning of March. 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 we spent four weeks at Evelina Children’s Hospital (St Thomas’), in London. He 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 we decided to go to Demelza House to make him as comfortable as possible after the ventilator was taken out. 

 

From the moment we arrived at Demelza, we were made so welcome, and so at home. Lee and I felt very anxious about being somewhere new, with new faces, knowing this would be the last place we would be with our beautiful Joshua. However the staff were amazing. The seemed to have a sixth sense to know when to be with you and when to leave us to have some time alone. 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 and our whole family (our parents and Lee's brother), 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 was even able to give him his last bath, which was made so memorable.

 

Their support immediately after Joshua passed away was just superb. Lee, myself and our parents, were able to stay there which allowed us time to be together as a family, whilst we arranged funeral. We were totally looked after not to mention the free flowing tea, coffee and food. Even now they are continuing to support us, with a bereavement weekend, and activities and events to remember all children who have passed away whilst in their care. They have individual support if we need it and even a grandparents group for our parents.

 

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.