Member-only story
Family challenges
Florence, Forever Young
That’s not my daughter’s real name — it’s my pet name for her and although now over 40 years old she will be forever young
Early months of worry
She was three months old and had been having difficulty keeping her feeds down. The doctor examined her and referred her to a consultant.
‘Failure to thrive’ was the reason given.
Over the next year she spent two weeks in a local regional hospital, another two weeks in the national teaching hospital.
After brain scans we were hearing the words hydrocephalus, then encephalopathy. They were frightening words, terrifying for any parent.
Encephalopathy means any disorder or disease of the brain, especially chronic degenerative conditions.[1] In modern usage, encephalopathy does not refer to a single disease, but rather to a syndrome of overall brain dysfunction; this syndrome has many possible organic and inorganic causes. — Wikipedia
The specialists could offer no explanation.
Referral up the chain of expertise
Then our daughter was referred to Great Ormond Street Hospital in London and…
