Will and Nessie.

Our son Will was referred to Naomi House in Winchester when he was 6 months old. It had been a difficult time mainly spent in Hospital where he had been diagnosed with a degenerative brain disorder. He was having near constant seizures which were difficult to control. He was blind and had to be fed through a tube. The Doctors at John Radcliffe Hospital had exhausted all options and there was nothing more that they could do.

When we were referred we thought that going into a children's hospice would be a sad, depressing place but how wrong we were. The home was filled with laughter from children, their families and the staff. We immediately felt relaxed and we were encouraged to use the home in whatever way we needed to. Will loved it, definitely at his happiest there. We spent hours in the Jacuzzi with Will just floating around. We think that the water and quiet helped the agitation in his head and he would just fall asleep. He had music lessons with the music teacher and enjoyed playing in the ball pool. The sensory room was also a favourite. The gardens are lovely and we would spend time listening to the water running and smelling the roses, important to stimulate a blind child. He had one to one care from a nurse who would do everything if we wanted them to, or just be on hand to help if we wanted to do everything for him. Everything was flexible and designed to help as much as possible.

But that was all for Will. Jo and I stayed in the family rooms upstairs from the children. During the evening we would walk down to the local pub together if Will was stable enough, have a meal and quite a few drinks and be able to talk about difficult decisions we were having to make. More importantly we could just spend a few nights together to recharge our batteries. We would stagger back to Will knowing that he had been well cared for and we were never judged for having one drink too many! It was impossible to do this at home as we needed to do drugs for Will every couple of hours.

Will died at Naomi House in the middle of the night snuggled into my armpit on 5th October 2007. This was his usual sleeping position for some reason! We put him into bed for the last time in the butterfly suite, which is a chilled bedroom where children can be at rest until their funeral. We stayed and were looked after by the family support team. The most important thing was that we didn't have to leave him at all. We were able to continue to play him music and talk to him. Friends and family were able to come and say goodbye to him. We had spent time with the family support team and chaplain thinking about his funeral, so we already had it planned by the time he died. This meant that it was exactly as we wanted it to be and we had had time to really think about it. The help and support at Naomi House made the worst experience in our life manageable.

They hold a remembering day every year for families. It is so well thought out and it allows us one day to just think about Will and all that he brought us.

On 30th July 2014 Bethany (named Nessie by her big sister) was born. Having been through it before we recognised the early signs that she had the same condition as her brother. We had been told following genetic testing that there was no increased chance of problems; Will was believed to have been subject to an isolated problem.

The Doctors contacted Naomi House as Nessie was not expected to survive for 6 months; her epilepsy was worse than her brothers’.

Once again Naomi House just made everything happen with no fuss. It was different this time; Will had spent much time there for respite care and loved it. Nessie however found it too noisy as any sound would cause fitting and pain. Jo and I took it in turns to stay in bed with her 24 hours a day during the last months of her life, where she was happiest. However, the staff of Naomi House were working hard in the background organising facilities and medical supplies for us at home, liaising between the various Doctors and our GP and making sure we were ok. One of the Naomi House Consultants admitted Nessie to Hospital and adjusted her medication to make sure her quality of life was as good as possible and that she was comfortable. This made a huge difference. He also prescribed all of the drugs we would need to avoid having to go to hospital again. 

Whilst all this was going on the family support team visited to help us tell our two year old, Katy what was happening. She knew her sister couldn’t see and was poorly but actually explaining the situation was very hard when we were struggling.

Nessie deteriorated rapidly and died at home with us on 13th February. She had been asleep for 24 hours but responded when Katy came to see her shortly before she died. 

We took Nessie to Naomi House where we put her in the butterfly suite and stayed with her until the funeral. The staff made such a fuss of Katy that she thought it was an amazing holiday! She regularly asks to go back, proof if ever needed of the happy and positive atmosphere of the place. 

The support since both of our children’s deaths has been fantastic.

We hope you never need their services but for the families who do, the money raised for Naomi House and Jacks Place is invaluable.

Jo and James Trafford.

James works for the Police and earlier in the year his shift resolved to raise some money for Naomi house having seen the superb work carried out with James's family. The idea of the Three Peaks Challenge was raised and agreed on. As a shift the team plan on completing the challenge, Snowdon, Scarfell Pike and Ben  Nevis as one over the August Bank Holiday weekend. Given the average age, fitness and map reading ability of the shift it should be a challenging couple of days. Not least spending nearly 24 hours in a minibus together...