Lexie’s story

Coming to Bluebell Wood for the first time was quite a scary experience for us. We were worried about what people might think because ours was an unusual situation. We were visiting with our grand-daughter Lexie who was 10 months old at the time and had just been diagnosed with an extremely rare life-limiting metabolic condition known as a Zellweger Spectrum Disorder.

Lexie had lived with us from the age of eleven weeks old as her parents were unable to care for her.  Social Services supported me and my husband to gain a special guardianship order for Lexie, which is similar to an adoption. We were devoted to giving her a loving home and special family life following her difficult start.

At that first visit I had to work hard to hold back the tears. Bluebell Wood had been identified by healthcare professionals and social care staff as a suitable place for Lexie to have contact visits with her parents. We were still coming to terms with Lexie’s diagnosis and it hadn’t really sunk in that her condition was terminal, this made the word hospice fill us both with fear. It was scary for me to think I had to leave my beautiful girl in the hands of strangers for four hours every month. However, Jo and Kate, the day-care staff at Bluebell Wood were fantastic and allayed all our fears as they showed us around. We realised that we needn’t have been concerned because everyone was amazing.

Lexie became a regular visitor at Bluebell Wood making use of the daycare sessions; she particularly enjoyed the music therapy sessions and even appeared on Daybreak TV with her mummy and daddy when the hospice was being filmed for a Christmas special back in 2011.

As Lexie was blind and had a severe hearing impairment she sometimes found it difficult to settle into new surroundings, however she loved it at Bluebell Wood and we felt happy knowing that she was in very safe hands.

Lexie’s condition was progressive and eventually following a short spell in hospital she passed away in June 2013 aged two and a half.  Without the help of Bluebell Wood Consultant Dr. Anton Mayer and the Bluebell Wood nurses we wouldn’t have been able to realise our dream of fetching our baby home to die.

Anton made it possible for family and friends to visit and say goodbye to Lexie in their own time and in familiar surroundings.  The nursing staff ensured we had people to support us overnight, and were just at the other end of the phone if we ran into difficulties. The day after we brought her home, Lexie died peacefully in my arms with her beloved Grumpa by our side.  She had waited until we were on our own with her and all the nursing staff had gone.
PWe didn’t feel frightened that this had happened, we calmly picked up the phone and the nurses from Bluebell Wood came to assist us and verify Lexie’s death.  I then carried my sweet girl to the car and we drove her to the Forget-me-not suite at the hospice. We stayed for a few days in the peace and tranquillity of this haven created specifically for bereaved families. The staff couldn’t do enough to help us, and we were truly pampered as we were guided through the processes we had to go through at that difficult time.

The help we were given at the end of Lexie’s life was invaluable to us and truly helped us to come to terms with our loss. They helped us to understand what we needed to do and put us in touch with an amazing funeral director.

Jo, Kate and Julie attended the funeral on behalf of Bluebell Wood. We were so proud when Jo did us a great honour and spoke so knowledgeably and eloquently about Lexie and her times at the hospice.

We wanted to share this story to show that Bluebell Wood Children’s Hospice is a wonderful place and the staff who work there are truly amazing.

We have created a memorial to Lexie and are committed to raising funds on behalf of the hospice in Lexie’s name.  Please give generously to this amazing cause at: