Lily Mason, eight, saw her community uniting in support of her rare disease that only limits her eating to nine safe foods.
The disease is called Mast Cell Activation Syndrome (MCA). This immunological condition has mast cells release an excessive amount of chemicals which results in a number of chronic symptoms, including cardiovascular, dermatological, gastrointestinal, neurological and respiratory problems.
Lily’s blood cells are attacking her body and causing painful rashes and itches. Normally, cells react to pain or injury but with MCA, the cells are triggered abnormally. Because of this, Lily could only eat nine different foods that bring on the weakening symptoms of MCA.
The nine foods: fresh chicken; Maris Piper potatoes (without the skin); sunflower oil; maple syrup; oats; swede; gluten-free rice; sugar, and white chocolate.
If she eats anything else, her MCA flairs up and she experiences abdominal pain, vomiting, rashes, and a number of other painful reactions.
But food isn’t the only thing that brings out the disease. Wash products, soaps and pressure on the body also bring on the rashes as well. Lily can’t sit for too long before experiencing the chronic pain and skin redness. Even potent scents bring about that pain.
“For example if we are out and about, strong perfume can cause her a lot of pain so she will hold her breath when she walks past someone with perfume on,” said her mother Mason.
Mason put together the fundraising event at Rushcliffe Country Park in the U.K. where they live. The charity will raise awareness of this extremely rare disease and support others who have it. The event included a 5k walk where people from all over the UK traveled to take part in. In total, they raised over £1,000 which exceeded their goal of £200.
