The story of Emily
When my youngest son was born in 2014 I felt like the luckiest woman in the world. I had 2 healthy boys and my family was complete. Everything was fine until he was 18 months old. He contracted what we believe to be hand foot and mouth but he was covered from head to toe in a rash. 3 days later he started to be violently sick and had diarrhoea. The sickness stopped but 6 weeks later the diarrhoea continued, which was foul smelling and a very strange colour. We visited the doctors weekly, but there were no answers. He changed, became clingy and cried all the time. It was a very worrying time. We were finally admitted to hospital where they initially thought it could be celiac disease. He began to swell up as the protein level in his blood dropped significantly. He had a pic line fitted and we were transferred to a children’s hospital for 10 weeks where they put him on tpn. They needed to do an endoscopy to try and find out what was wrong. It finally came back with the diagnosis of ‘autoimmune enteropathy’. This is where his body can’t absorb goodness from food. It felt like our world had been torn apart- what did it mean, how would we manage, how could we support him. We had so many questions! He had a Hickman line fitted and we were trained on how to use tpn for night times but luckily he was able to come off it and now manages with immuno suppressant medication everyday. 3 years on and he is doing really well. He has blood tests every 3 months and yearly check ups with his consultant. Food is a big issue, which I believe is a result of trauma at such a young age and some sensory processing issues. He is the only person we know with this in England so no support group out there. In the early days it was really tough not being able to speak to anyone who truly understood. I’m hoping that by sharing our story, it may help others. Thank you for reading! #showyourrare