Estella was diagnosed with Spinal Muscular Atrophy (SMA) Type One in April of 2011. Although fairly uncommon the disease is the number one genetic cause of death among babies. The muscular development becomes limited and Estella has had breathing difficulties and has lost all but basic movement in her hands. Details about SMA can be found at the Jennifer Trust website. www.jtsma.org.uk
One thing that her parents found difficult at first was to believe that even with such a condition and the inevitability that Estella would be unlikely to see her first birthday there could still be good times that could be shared. Estella overcompensates for her physical difficulties with a sharp mind and a wicked sense of humour and has brought many happy days to her parents and grandparents.
During a respite stay at Bluebell Wood Estella became particularly poorly and moving her back home would have been a very difficult process. Because of this her Mum and Dad decided to stay at Bluebell. Her father explains, “It is not just because of the care that you get, it’s because of the quality of life and experience that is offered here. Bluebell is an amazing place but not because of the facilities and the equipment – it’s because of the people who work here. They have a philosophy based on turning what is a horrendous experience into one that brings comfort, support and even laughter to the children and their parents. The support is so personal and so loving that you feel that every nurse here has been part of Estella’s journey.”
Estella’s Mum added, “ We have seen the place from both sides now. We have been here for respite and we are now staying more long term with Estella to make sure that she has the best possible experiences before we have to say goodbye. She has had art, music and multi-sensory lessons. Never forget that behind her disease there is a little girl who gets excited and thrilled dipping her hands in cool paint and making sounds in the music room. She has had support here but we have also been able to walk around the gardens here and show her the flowers and trees. She needs to be on a special stretcher for this and it is simply an experience we would not have had at home.”
“I will be honest, “ her dad continues – “we were unsure about coming. I believe we had a fear of what a hospice may be like. If anybody feels that way I would urge them to visit for half an hour and you will see that this is a very special place run by extraordinary people. Bluebell Wood has given our family three very important gifts. They have given us space to enjoy our daughter, comfort to rest and know that she is getting the best care possible but most important of all they have given us the most precious gift of all – time. Time for Estella to play and laugh and smile, time for Estella to enjoy the kinds of things that a seven month old should enjoy and time to say when all this ends that we know she was in no pain and had the best possible experiences that she could have had in her short life.”
Mum and Dad are biased and they know that but they do say that every nurse and every visitor has commented on how gorgeous their daughter is. Mum says, “That is because they have seen Estella smiling and happy. They have seen her living and loving and being loved. We thank everyone involved for the amazing support that they have given. Estella did not come here to die. She came here to live.”
Estella lived the last two months of her life, surrounded by people who loved her and cherished every single day she stayed with us. When the day came that we had to say goodbye, she did it peacefully in my arms while daddy sang to her. There was no noise, nor drama but just peace of mind she had a fulfilling life.
All this was just possible thanks to such a magical place like Bluebell Wood, where miracles happen everyday. Our precious tinker never left us as we can feel her everyday by our side as she never left bluebell, her footprints are the star on their Christmas tree. Estella means star and Bluebell means hope and love for many families like mine. We will be forever grateful to them for giving us the most valuable presents of all, love and laughter.