From birth Lucy was a sickly baby and had many hospital admissions and tests. On Dec 5th 2011 she was admitted with what we thought was just a sick bug and dehydration. After 4 days she was sent home although she was still not one hundred percent.

She was upstairs in our room watching Tv when her Dad checked on her she was having a seizure and was blue lighted back to hospital where she was ventilated, after a CT scan was diagnosed with Hypertensive encolepaphy and sent to the picu at St George’s hospital after 2 days she was well enough to return to our local hospital but not for long as they had trouble stabilising her bp so she was transferred to the Evelina children’s hospital at St Thomas’s.

Lucy had numerous tests to find out why she was so poorly and why her bp was so high but they always came back with no answers.

Lucy spent nearly 7 weeks in hospital. She had a few more admissions after this, lots of invasive tests but still no answers.

In October 2018, she again was taken poorly vomiting every 5 minutes or so, again she was given more tests and transferred to Kings college as there was talk of having to put a pic line in as she was losing an extreme amount of weight in such a short space of time, not even able to keep water down. A doctor in Our local hospital who also worked at kings diagnosed cyclical vomiting syndrome.

Since this hospital admission Lucy wakes up every day with extreme nausea and is on Daily anti sickness medication.

Lucy’s illness has had a massive impact on her mental health and is unable to go out on her own and do things normal girls her age should be doing. 

I got Lucy referred to a gastroenterologist at Great Ormand Street hospital who specialises in Cyclical Vomiting syndrome, he decided to do a number of tests, after a endoscopy, barium swallow and an emptying test she was diagnosed with a rare condition called Gastroparesis, Dr Lindley took Lucy in to have a 24 hour Study where she was wired onto a machine, this would tell them how slow the food moved through her stomach and bowel.

When they received the results He said that Lucy would benefit having a Gastric pacemaker fitted, this was May 2020, we heard nothing until I contacted pals a couple of weeks ago to find out what was going on, we was then told that NHS England was not going to fund the operation so Lucy’s hopes of a better quality of life was shattered.

We are are now trying to raise the money for Lucy to have the gastric pacemaker surgery done privately and post op care  as she will have to stay in hospital at least 7 days after surgery as well as post op follow ups.

#Abetterlifeforlucy