BiographyEve was born on 5th November 2003 by emergency caesarean. Eve had a brain bleed and lung bleed on the 5th day of life. She was ventilated and eventually the vent was turned off in the expectation that Eve would pass away. Eve had other ideas.
Although Eve fought to survive she had suffered brain damage and had some major difficulties. Eve came to us at 17 months old. She had been diagnosed with Cerebral Palsy. Over the next few months Eve made some good progress, particularly with feeding. Her head control was improving and she was making her cognitive abilities very obvious.
Then Eve became unwell, she lost her swallowing ability and had an NG tube placed. However she soon regained her ability to swallow and things moved forward again. Several times Eve had minor illnesses and each time she would lose her swallow and need a tube for a while. Then in 2008 Eve had a major respiratory crisis. We were rushed to hospital, referred on to Nottingham and eventually seen by a Consultant ENT surgeon.
Looking back over the events since Eve had been with us the Surgeon agreed to do an MRI to see if there was anything else to explain the things that with hind sight seemed to be connected. The MRI pointed towards a Mitochondrial disorder.
Eve's health began to decline bit by bit. She lost her swallow in this crisis and never regained it, she lost her cough reflex too. Her head control was slipping and eventually she lost purposeful movement in her limbs. We were referred to a Neurologist and Eve underwent many tests and a Muscle Biopsy.
2 years after her crisis Eve was finally diagnosed with Leighs Encephalopathy. This was our worst fears confirmed. We had researched Mitochondrial disease and Leighs was the one that fitted best, but we didn't like it so had dismissed it from our thoughts. Seeing that written in black and white was very difficult but also helped us to accept.
In March 2011 Eve had a pneumonia that left her unable to maintain her airway whilst sitting up. We had a wheelchair adapted so that she could get out and about laid down. We felt very much that Eve was slipping away and we wanted, needed, to make the most of every opportunity. By early summer Eve was sleeping over 20 hours a day. She needed noninvasive ventilation via a full face mask when she slept. However when awake Eve's smile could still light the room and she tok great delight in everything around her.
We wanted to improve the quality of Eve's life but we also wanted to ensure her quality of death was as good as it could be too. We spoke with her consultants about a tracheostomy and everyone agreed this was in Eve's best interests. We wanted her to be able to sit up and feel the wind and the rain on her face again. We wanted her to be able to articulate in the world around her as much as possible.
So on 1st September Eve had her tracheostomy. What a transformation, improvements in Eve's quality of life beyond our wildest imagination. Eve was able to sit up and to participate in life around her. She also began to regain the skills she had lost. Head control, reaching out, eye pointing. Eve was able to remain alert from 8 am till 4 pm, something she had not managed in two years.
These improvements continued until 16th September this year when out of the blue Eve suddenly began a series of seizures. rescue medicines only held them for a matter of hours before she started again. An increase in regular medications seemed to help and we went home from hospital, however Eve was now sleeping most of the day again. Rarely opening her eyes and not showing much response.
A further increase in medication gave us a little bit more of Eve back. When awake and alert we could see Eve was still there. Things seemed to be improving until in the early hours of her 9th Birthday Eve again descended into uncontrolled seizures. A blue light trip to hospital where they were eventually able to stop her seizures. But we are now afraid that Eve's condition has deteriorated and we are back to sleeping for more of the day than she is awake. Pressure sores making every position uncomfortable and the fear of where this is leading.
Still, when she can open her eyes we see that smile that lights our hearts, Eve is such a happy little girl even when so unwell. She rarely complains, even when her sores are cleaned and dressed. Eve has so much to give even when she seems so frail.
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