US trip to give Storm relief

Nicole and her daughter Storm Thomas. Pictures: Marcelo Palacios www.communitypix.com.au d414567
Nicole and her daughter Storm Thomas. Pictures: Marcelo Palacios www.communitypix.com.au d414567

Storm has the rare condition Eosinophilic Esophagitis (EoE) and can only tolerate a nutrient formula and water.

Storm said the disease came on very suddenly and there was no known cause or cure.

‘I felt really sick and tired. We thought it was something to do with my stomach,’ she said.

‘It took a while for the doctors to figure out what it was because EoE is so rare. We haven’t found any foods that I’m able to eat yet.’

Storm’s mother Nicole Thomas said there were white blood cells in her daughter’s oesophagus that attack anything she ate and then turned on her own body.

Storm said she tried six non-allergic foods so far, one per week, and each time it ended in hospital and severe pain.

‘I have tried carrots, pears, sweet potatoes, chicken, but none of them was right for me,’ she said.

Storm said she woke up at 4am every day to have her formula through a pump, which takes 90 min- utes four times a day.

‘I do get to see my friends but sometimes it’s a bit too hard,’ she said.

‘If they are going out to the beach or something like that I can’t go with them because I can’t take all my stuff with me.

‘At school I can’t sit with my friends during lunch time because I have to go to the nurses offices to be put on the formula.’

Michelle McKain has helped organise fundraising for her niece, through the Serendipity Medi Spa clinics in Willetton, Canning Vale and Baldivis, to attend a medical conference in the US.

Ms Mckain said Storm’s family were hoping to raise $20,000 to attend the EoE conference in July and her clinic was aiming to contribute $5000.

She said the clinic would donate $500 initially and $20 for every share and like on their Facebook page.

Storm said the conference would allow her to meet other people with the rare disease and have someone to relate to.

For more information visit the Facebook page Storm_eoe.