Rare disease means eight-year-old girl can only eat nine safe foods


A number of people came together today (Sunday, October 22) to raise awareness of a rare disease which means one young girl is only able to eat nine foods safely.

Lily Mason, eight, who lives in Keyworth with her mother, Joy, father, Philip and younger brother Harry, has been diagnosed with Mast Cell Activation Syndrome (MCA) after suffering with symptoms since birth.

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The rare disorder means that Lily’s red blood cells attack her own body and cause her to feel pain, have painful rashes and itches and feel sick just from carrying out day-to-day life.

Joy Mason with her daughter Lily Mason

In a normal person, the cells would react to pain or an injury but in people who have MCA, the cells trigger inappropriately, causing severe debilitating symtoms.

As a result of the disorder, Lily can only safely eat nine different types of food without having symptoms of MCA.

These foods are: fresh chicken; Maris Piper potatoes (without the skin); sunflower oil; maple syrup; oats; swede; gluten-free rice; sugar, and white chocolate.

When Lily reacts to a trigger, her symptoms includes abdominal pain, vomiting, itching and burning skin, rashes, fevers, cystitis, fatigue, headaches, throat swelling and tinnitus.

Other triggers for Lily include heating up or cooling down too quickly, chemicals such as washing products and soaps, and too much pressure on the body, which means she can’t sit down for too long without getting a rash.

Lily’s mum, Joy Mason, 32, decided to organise the charity event in Rushcliffe Country Park, to raise awareness of the rare disorder and raise money for a charity which supports sufferers.

Lily Mason leading the charity walk in Rushcliffe Country Park, to raise money for Mast Cell Action

She said: “The disorder is so rare it was only discovered in 2009. It isn’t even listed on the NHS website yet so I think it is important more people understand it. Many people may have it and not even know because it is misdiagnosed so much.

“We decided to walk five kilometres today as part of a wider initiative called ‘500 Legs Walking’. It is for a charity called Mast Cell Action who are campaigning to get more people to understand the rare disorder.”

Lily goes to school with her younger brother Harry, six, at Crossdale Drive Primary School in Keyworth.

Mrs Mason described Lily as a “trooper” and a “caring young girl”.

She said: “Lily has such an innate understanding of other people’s pain and suffering because she experiences it on a day-to-day basis. It isn’t easy for her and she is worried all the time about something triggering her disorder.

Charity walk in Rushcliffe Country Park, to raise money for Mast Cell Action

“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.”

A number of people travelled from across the country to be involved in the 5k walk on todayday and more than £1,000 was raised, which was well above the target of £200.

Members of the group included friends, family, school teachers and other people who have the rare disease.

You can donate here.



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