6 October 2023

Nancy and Ted’s story with Eosinophilic Oesophagitis

Some children spent their summer holidays at Legoland, but Nancy and Ted have been training for a 24 hour walk from Legoland to Southampton Children’s Hospital taking place on the 7th October in support of Southampton Hospitals Charity.

Laura Ashley lives in Southampton with partner Oliver, and children Ted, 10, Nancy, 8, and dog Enzo!

“Nancy was unwell as a baby and we had recurring visits to the doctors who told us it was reflux and she would grow out of it.

She continued to get worse, becoming violently sick whenever she ate anything to the point that she couldn’t swallow even water at one stage.

Nancy’s allergy team at Southampton Children’s Hospital referred Nancy to the Gastro department and by working together they diagnosed Nancy with a rare autoimmune disease called Eosinophilic Oesophagitis (EoE).”

EoE affects around 1 in 1,500 people and is a chronic disease affecting the oesophagus (the tube connecting the mouth and stomach). Too many eosinophils (a type of white blood cell), in the oesophagus causes inflammation and scarring making swallowing difficult.

“While most hospital stays were only a day or two, we have spent some weeks in the children’s hospital when she was at her worst. We are so thankful to the hospital for continuing to run tests until we had a diagnosis.

Since then, Nancy’s diet has changed again and again as her disease has grown with her. We have eliminated triggers exacerbating her condition, and have learned to manage her symptoms.

Now, due to food obstructions worsening, Nancy has been fitted with a nasogastric (NG) feeding tube. For Nancy, this is a relief. She can enjoy being a child, playing and joining in with her friends instead of worrying about the next time she eats. This has also ensured she maintains a steady weight.

Recently our son Ted has been having similar symptoms to Nancy and will soon be tested for the same disease.

The staff at Southampton Children’s Hospital are simply amazing! Nancy has always had the very best care, and without them, we wouldn’t have had the diagnosis.

To thank the hospital staff for their care, the children will be attempting a 24 hour walk from Legoland Windsor to Southampton Children’s Hospital at the beginning of October as well as taking part in the Junior Great South Run.

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