Simpsons ŠKODA Great Yarmouth are pleased to be supporting Willows Journey throughout 2014.
Willow is 4 years old, and looks like any other 4 year old little girl. Unfortunately, this is not the case. Willow first became unwell at just 20 days old and was admitted to the local hospital. She was then transferred from the local hospital for an operation for what the Doctors thought to be pyloric stenosis. The main symptom of this, is persistently being sick. It affects around 2-4 in 1,000 new born babies. It causes a blockage of food at the stomach outlet. Pyloric stenosis means a narrowed outlet of the stomach. Unless treated, it can lead to a serious illness. Willow had an operation called a pyloromyotomy under a general anaesthetic, which normally cures the problem. Unfortunately, Willow had this operation twice and after both operations, Willow continued to vomit. She was then put onto a free from diet. Willow became a mystery and was referred to Great Ormond Street Hospital.
Since being under the care of GOSH, Willow has had various operations and investigations. Willow has been diagnosed with a few things:
Non ketotic hyperglycaemia (NKH) – this is an inherited condition where the body is unable to breakdown and process some of the building blocks of protein (amino acids). It can lead to high levels of the amino acidglycine in the body. There are several forms of NKH with the symptoms and outcomes differing widely.
Gastroparesis – a chronic condition in which the stomach cannot empty itself of food in the normal way and is paralysed. Typical symptoms include feeling sick or full when eating, bloating and weight loss. The cause is not due to a blockage, but thought to be a problem with the nerves or muscles which control the emptying of the stomach. If the nerves are damaged, the muscles of the stomach and intestines do not work properly which slows down the movement of food.
Willows main symptoms are dehydration from repeated vomiting, gastro-oesophageal reflux disease (GORD), where stomach acid leaks out of the stomach and into the gullet, malnutrition, when the body isn’t getting enough nutrients and unpredictable blood sugar.
Willow is fed by a feeding tube which is surgically inserted into her bowel. Liquid food containing nutrients is fed through the tube which goes straight into her bowel to be absorbed so it completely bypasses the stomach. Willow has also been fed intravenously where liquid nutrients are passed straight into the bloodstream via a catheter (TPN). Willow has had more investigations as to why she in so much pain and still suffers a great deal, but she is still undiagnosed.
To look at Willow, you wouldn’t think she was so poorly. She seems to carry on regardless of what her body or the hospitals throw at her. At the time of writing this, Willow has undergone a staggering 32 operations. We met up with her Mum, Leeanne earlier in the year and despite her telling us about some improvements they would like to make to their house to make it more comfortable and normal for Willow (including a wet room to make showering Willow easier and a medical storage room as they have a lot of equipment), Leeanne told us that she is raising money for the children’s ward at James Paget University Hospital this year. Their aim is to go to James Paget Children’s ward on 1st December 2014 with gifts galore! Willow spends a lot of time there and they want to improve the facilities for the children. We’re not quite sure where Leeanne gets the time to fundraise for others as she also has Willows big sister Daisy and little brother Sebastian, but we are happy to help.
We are selling Willows Journey keyrings in our showroom and also various small bags of sweets. We will have various things going on in house to raise money throughout the year including cake sales and non uniform days. You can also follow Willow’s progress on her facebook page here