Holly was born in October after a uneventful pregnancy, and until her 1st birthday she hit all her major mile stones e.g. turning over, sitting up, crawling and pulling up to stand.
In the April following her birthday she was taken into our local hospital with a nasty ear infection and they discovered that she had a large spleen and swollen liver and began testing for various health conditions with these symptoms. She was sent to Birmingham children's for a bone marrow aspirant and they took bloods for metabolic.
In the June we were given the devastating news that she had niemann-pick type c, which is a Neurodegenerative disease that causes sufferers to forget things they have learned, sometimes called childhood Alzheimer's. In the 18 months that she has being diagnosed, Holly has had numerous stays in hospital and is now fed by a nasal gastric tube and has lost all her abilities, she can no longer sit by herself without support and can't crawl anymore. She has since September also being diagnosed with Crohn's disease which causes her to have lots of problems with digestion and weight gain.