The Story So Far

Olivia was eventually diagnosed with an extremely rare metabolic disorder in November 2008 after multiple tests that were made while she was in intensive care.  VLCADD or Very long-chain acyl-coenzyme A dehydrogenase deficiency, to give it it’s full name, is a genetically inherited disorder that means Olivia was born without the ability to produce an enzyme that allows us all to break down long chains of fat either in our diet or from our own fat stores.

Because Olivia didn’t eat enough straight after she was born, she was unable to use her own fat stores, and so her blood sugar dropped.  At the same time, the fat from her own stores entered her blood and after 48 hours made her heart rate fluctuate and eventually stop.

The combination of many hours with low blood sugar and then 15 minutes with low oxygen, Olivia suffered an extremely large injury to her brain.

There are many consequences of her brain injury or cerebral palsy and the list unfortunately is growing.  Olivia will have no learning capacity affecting both her cognition and motor function and she currently still makes no willful movements.  Since she was 5 weeks old, Olivia has suffered severely with Gastroesophageal reflux (common in neurologically damaged babies) meaning she vomits regularly throughout the day and night. From around five months old she has been suffering multiple epileptic seizures every day which we are hoping we may one day, be able to control through medication.

At nine months old after an exacerbation of her reflux, Olivia had to be fed directly into her small intestine in order to give her stomach a rest.  During this time, although not necessarily a result of this episode and probably the natural progression of the impact of the injury to her brain, Olivia stopped orally bottle feeding and forgot how to suck and will need to be tube fed indefinitely.

Owing to where the damage to her brain actually is, Olivia is severely visually impaired and cannot see any detail only very bright lights and she seems unable to fix her eyes on anything.

Olivia has increased muscle tone which gives her stiffness in her limbs and joints and requires daily physiotherapy. She has a dis-functional gut, a dislocated hip, struggles to swallow her own saliva and spends many hours screaming and in distress due to unexplained pain. Ultimately her life expectancy is childhood at best.

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