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Below is Olivia's story, which sounds very bleak but life with Olivia is a roller coaster and she is fighting on. Thank you to all of my friends who are going to run with me or support.
Before Olivia was born, on 25 September 2016, a parasite called toxoplasmosis found its way into her. It caused inflammation in her brain and eyes causing irreparable damage as well as reducing the capacity of her liver thus causing her to have a high level of jaundice. She was born two months early by emergency caesarean section weighing 4 pounds or 1.8 kilograms. After a double volume blood transfusion, surgery to aid her lungs and a quick transfer to NICU (Neonatal Intensive Care Unit) in Bristol Olivia spent the first three months of her life in four different hospitals; Great Western Hospital, Swindon, St Michael's Hospital, Southmead Hospital and Bristol Royal Hospital for Children. She had her brain operated on on three separate occasions during this time. The first two operations were to insert and then adjust a reservoir to allow doctors to 'tap' spinal fluid from the brain to ease the pressure and the third was to insert a shunt which continuously drains via a pressure valve the same fluid from the brain to the tummy. She was transported in an ambulance under blue lights 11 times during this time. Olivia was discharged on 19 December 2016 just in time for Christmas. Her medication included toxic chemicals akin to chemotherapy drugs that she took until her first birthday as well as some supplements to counter the side-effects of the drugs as well as eye drops that must be given four times a day. Since leaving the hospital the roller coaster ride has not stopped. We have been on holiday with Olivia and enjoyed wonderful times with her. Olivia's development since leaving hospital has not been good. She started losing weight at one point so a naso-gastric tube had to be passed through her nose into her stomach for us to top up her breast-feeds with a prescription milk. She has not learned to eat solid food as she can't see and has an oral aversion so she hates anything going near her mouth after so much medicine was forced on her when she was smaller. Olivia is almost a year old and she cannot sit up; an indication along with other signs like the resistance in her muscles in her limbs that she has cerebral palsy. Olivia has had two big seizures that lasted three and eighteen minutes respectively earning her her 13th and 14th ambulance rides. The subsequent EEG (ElectroEncephaloGram or brain scan) showed a grossly abnormal result due to her brain damage and that Olivia was prone to seizures and seizures that are so extreme that they will be hard to control in a syndrome called Lennox-Gastaut syndrome. Olivia has started on a low dose of an anti-epilepsy drug and is slowly building up to the maximum dose. At the moment Olivia is expected to live to between 20-30 years old as a result of seizures and the toll they take and this is why Helen House has agreed to take on Olivia.
Olivia is currently fighting some sort of infection in her gut and we are waiting for blood test results and she recently went under general anaesthetic in Great Ormond Street Hospital to perform surgery on her eye. The inflammation in her eyes caused irreparable damage to both eyes meaning that she is currently blind with no hope for her left eye and glaucoma in her right eye so we are hoping that she will develop sight in the next few years.
