The story of Natalie
Our beautiful daughter Jessica was born on the 13th July 2009 in the weeks prior to her birth we were told she had suffered extensive brain damage which would very likely severely affect all aspects of her development. At 35weeks pregnant I was given the opportunity to end my pregnancy and terminate Jessica’s life. But that wasn’t an option we was willing to take, we wanted to be able to give jessica the choice and she choose to fight. Jessica was born having infantie spasms, and was fed via a nasal gastric tube. At 3yrs of age we finally got to see a neurologist from birmingham childrens hospital who diagnosed Jessica with a rare brain disorder called PONTOCEREBELLAR HYPOPLASIA at the age of 7 She was also diagnosed with PEHO syndrome both of these disorders are genetic and life limiting. In the last 8 years we have had many ups and downs this last year being the worse. She suffers from a range of complex issues refractory epilepsy with multiple seizure types she continues to have many seizures a day, dystonia, She’s gastrostomy fed, registered blind, microcephaly (small head ,small brain) bowel disorder, she has an obstructive upper airway, stridor, dislocated hips, scoliosis, fluctuating muscle tone, severe reflux, joint contractures, tapered hands, oedema, recrrent UTIs, recurrent eye infections due to posterior blepharitis the list goes on……
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