This why I am doing this. This written by my daughter (Arthur’s mum). 

Arthur’s adventure with Acorns. Written by Arthur’s mum Charlene

In 2017 Arthur was diagnosed with a rare genetic metobolic condition called non Ketotic Hyperglycinemia which is a terminal condition at just 10 days old. He was diagnosed when he was in NICU (neonatal intensive care unit) and one of our lovely nurses told us about Acorns and referred us to them. From there we met our amazing support worker and learnt more about what they did there and what they could offer.

When Arthur was 2 months old he became very unstable and his seizures were not controllable and we made the hard decision to go to the hospice for end of life care. However after 4 months of being on end of life it was obvious Arthur had his own plan and wanted to go home again so thanks to all the amazing nurses and the lead consultant we managed to wean him off the end of life medication and bring him home again after we had all lived at Acorns for 4 months the together.

Thankfully because of Acorns children’s hospice we managed to have our amazing boy Arthur at home for 2 years. On that time Acorns continued to support us as family with emotional support and guidance as well as Arthur going there for regular respite care with the nurses he loved. He loved going there and being spoilt by all the staff. His favourite things were the hydrotherapy pool and the sensory room.

On Thursday 25th April this year I took Arthur for his sleep over at Acorns (respite), I kissed him goodbye and told him I loved him and would be back Saturday to pick him up. We always called to check in on him and the nurses always rang us with any concerns.

On Friday 26th April he started having seizures and needed a dose of rescue meds. This wasn’t unusual for Arthur. But sadly the rescue medication given him didn’t have an effect. I was called and informed of what was happening and I agreed to meet him at Worcester hospital. Over the next 2 days Arthurs seizures got worse and he wasn’t responding to any treatments. Myself and Ashley made the decision to be transferred again to Acorns for e d of life care like when he was 2 mi this old. Only this tome it felt different.

On Monday 29th April we were transferred to Acorns via Ambulance. We were met at the doors with friendly familiar faces and warm hugs. We discussed what was happening and it was agreed that it looked like Arthur was getting tired and his body was shutting down. We started end of treatment to keep him comfortable. All the staff rallied around us to make the room perfect for us as a family. The 4 of us were all reunited again and Arthur was comfortable finally. As the days went by Arthur continued to deteriorate and we decided after talking to our nursing staff it was time for us to get the whole family in to see him. The staff supported us in talking to family and explaining what was happening as well as helping us talk to Ellie Arthur’s big sister and explain to her what was happening. She also did lots of play therapy with her sibling support worker.

Thursday 2nd May 5:50am I was woken by the 2 nurses who were sitting with Arthur that night so we could sleep. They explained how over the last few hours his breathing had become shallow. We sat and talked about was happening and they encouraged me to hold him tight and talk to him. I sat and cuddled him and kissed him whilst telling him how much I loved him and how proud of him I was. Arthur’s daddy then sat down to cuddle him and Arthur was snuggled right down into His daddy’s arms and lap and took his last breathe at 7:20am. The nurses consoled us and helped us wake Ellie and tell her Arthur had died. Ellie came and saw Arthur to say her goodbyes.

We took Arthur to the special bedroom (cold room) where he had a bed made up for him and he remained there in place he loved surrounded by everyone who loved him until the night before his funeral.

Whilst in the special bedroom I was able to wash him, brush his hair, get him dressed and comfortable. All our family were able to come see him as well.

We will never ever be able to thank Acorns and all the staff what they have done and continue to do for us a family. We as parents have a lifetime of care from our family support worker. And Ellie goes to regular sibling support groups as well as her sibling support worker doing home visits and helping her school with supporting her. Thanks to Acorns and the Staff we hd 2 totally amazing years with Arthur and for that we are forever grateful.

We love you Acorns Worcester three counties.