From the local paper:
Abbie Brandon, the two year old surrering from Cockayne Syndrome, has lost her fight for life.
Her devastated parents, Matt and Misti are still in shock after their daughter's sudden death.
She had developed pneumonia and septicamia after catching chicken pox form her four year old brother.
Matt said "It was too much for her little body to cope with. We'd taken her to the Luton and Dunstable Hospital because her breathing didn't sound right. They checked her over and were thinkgin about transferring her to Great Ormond Street. Misti rang me to tell me they were working on her really hard, but I arrived about five minutes too late."
Abbie was taken to Keech Cottage where the Brandons stayed with her. "We were able to say good morning and good night to her every day" Matt said. "Everyone has been wonderful. Now she is in her casket. We came home on Sunday and that was really hard. We didn't want to hide everything and tidy up her toys. We've kept her bedroom just as it was to enjoy the space. We both feel in limbo. It's so strange not having her here. She gave so much joy and made such an impact in her short life. She even taught us a few lessons. Her sensory co-ordinator said Abbie was one of the first patients to be used in a new staff communication initiative and Abbie proved that it did work."
Cockyane syndrome is a rare inherited disorder in which people are sensitive to sunlight and have short stature and the appearance of premature ageing. It is named after Edward Alfred Cockayne (1880-1956), a London Physician who specialised in hereditary diseases of children. To find out more about the support for sufferers, visit www.cockayne-syndrome.org.
This girl has been mentioned a few times in the local paper and as you do I sympathised with all concerned and moved on. This was until I joined this blogging site and began to read more about the condition thanks to Juzzy and his dealings with one very special little girl called Amy.
The more I have read on this condition and about Amy, the more I have wanted to help all children that have this condition. That is why I am asking you to give your support here , if you haven't already done so.
Please support Paddy with his Blogathon, to help him to raise some money for a very, very good cause.
Thank you.
