Emily is our youngest child she was born at 29 weeks after a placental abruption.
We had been transferred from Worthing hospital to St Helier Hospital Carshalton by ambulance incase of an early arrival and 24 hours after being transferred our precious baby girl arrived. She was a tiny 2lb 4 oz, she needed ventilating and help to develop her lungs with a drug called serfactant. I was unable to hold her as she was rushed off to NICU to be looked after. I then myself suffered a big bleed so was unable to see her until later the next day. From that day I expressed hourly so that Emily could have breast milk to help her grow and get stronger.
Emily spent 8 weeks in SCBU fighting to breathe without CPAP and fighting infections, poor weigh gain and generally just growing. A routine ultrasound showed possible brain damage and at 9 weeks old our world fell apart when that was confirmed by an MRI scan.
Emily has Periventricular Leukamalacia (PVL) which in basic terms is cysts in her brain. This has caused parts of her white matter to die. The area that is affected is mainly mobility and at 6 months old it was confirmed that Emily had Cerebral Palsy which involved all four of her limbs. She is now 16 months old and is able to sit up unsupported for a few seconds and is able to roll from front to back. Although at the the moment there is no sign of crawling or walking Emily has worked hard to improve with Physio at Horsham hospital. She also attends the Dame Vera Lynn Trust School for Parents in Billinghurst one morning a week in term time. This has helped her cognitively and she is as bright as a button, learning lot's of new words. (When her sister lets her get a word in edgeways that is!)
Unfortunately neurological problems arent Emily's only problems. Emily also has suffered from Gastro osphageal reflux disease since birth, Sandifers Syndrome and acute anemia. The reflux is badly controlled despite maximum medication. she can scream for hours in pain, arching her back, refusing to eat/drink. Many a night i've had to sleep holding her bolt upright to help the pain.
She needs to see a gastro specialist, but because we are out of area (west sussex) we are struggling to get accepted via the NHS route by several hospitals. In the meantime the damage to her oesphagus is becoming worse and she is rapidly dropping weight. She is in constant pain and weekly calls to get her referred are futile.
Whilst we are fighting to get her seen, it has taken six months and we can no longer wait as it is likely that she needs to have a gastrosomy tube if intervention isnt made soon. We need to get her in with a specialist and we are going to have to pay to be seen privately. This is where we need help. To look after Emily so i can provide the daily physio, medications, take her to therapies, hospital appointments etc I gave up my job ironically within the NHS. I set up cakes by Nicola https://www.facebook.com/pages/Cakes-by-Nicola/148705945245272 so I could work from home and all the money I make goes to helping Emily.
She needs an initial consultation with Great Ormond Street plus funds for tests and any treatments they recommend. We will adjust our target once we have more of an idea of the treatment plan.
We are tremendously grateful for any help that people can give to get Emily seen ASAP, every pound makes a difference.
Thank you for taking time to read our story.
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