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Orla Mc CaffertyDoherty hasn't added a story.
Help the most amazing little girl, Emily Eloise Prentice, who suffers from Aicardi Syndrome, an extremely rare condition.
This beautiful little girl is Emily. She was born in June 2011 and lives in Bangor, Co Down, Northern Ireland.
Emily was diagnosed at birth to be suffering from Aicardi's Syndrome, a very rare brain disorder. It causes her to have frequent epileptic seizures. Her disorder impairs normal brain development severely affecting, for life, her vision, hearing, digestion, learning, and mobility.
Emily's daily epileptic seizures are life-threatening with the ever present risk of Sudden Unexpected Death in Epilepsy (SUDEP). She requires constant medical care round the clock to monitor her condition, administer her medication, and control her food line which pumps a specialised liquid diet by tube directly into her tummy.
Everyday of her life is a constant struggle for her and her family. Emily’s family give her all of the care and love that she deserves. Her parents are determined to make every day of her life as happy as it can be. They do everything they can to ensure that Emily receives everything she needs.
She is cared for at home by her devoted working parents assisted by day carers partially funded by social services. The prospects for the security and quality of life that Emily and her family can enjoy is dependent upon the family having sufficient funds available to provide an adequate care level throughout her life. This demand places exceptional strain on the family resources.
As Emily grows so too does her need for specialised equipment,things that can help make Emily’s life more comfortable.Unfortunately this equipment is expensive and as Aicardi Syndrome is so rare, there are no big charities to turn to for help…
I am hoping to raise enough money to help buy some of this equipment. All donations big or small will be very much appreciated.
A very BIG thank you to all of you for taking time to read and help.
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