Charlie Bailey
Holland Landing, ON
On The Go with Charlie
Charlie Bailey has a rare skin disorder called urticaria pigmentosa. It's a condition which causes his body to produce overly high levels of histamines in his skin, making him prone to a type of allergic reaction. Certain medicines – including aspirin, insect stings, exercise and even sunlight can give Charlie a histamine reaction, which can lead to life-threatening anaphylactic shock. Charlie generally has hives all over his body, but they flare up into large fluid-filled blisters when his allergy is triggered.
At only three years of age, Charlie can hardly explain what’s wrong. And since this disorder affects only one in 250,000 children world-wide, most doctors don’t know anything about it. “I only know two other families in all of Canada where someone has this condition,” Charlie’s mother Nancy Bailey says. So Nancy makes sure Charlie always wears his MedicAlert® bracelet, so emergency workers and other caregivers know how to respond appropriately and to give him his EpiPen® if he’s in shock.
“We joined MedicAlert when Charlie was one year old. It’s such a relief knowing he is wearing his bracelet and it will talk for him if he is unable to. It makes me feel easier about sending him to school this September. Today I just purchased a Single Auto-Injector Belt through MedicAlert, so I know his EpiPen will always be with him in the classroom or playground,” Nancy exclaimed. Nancy also keeps an EpiPen in Charlie’s day-care backpack.
Charlie's annual membership allows his parents to make changes to his electronic medical record easily. “His drugs change so often,” says Nancy. “Right now Charlie takes two kinds of antihistamine several times daily, for a total of eight doses a day. He also sees a dermatologist every three months to help us manage his condition.”
“We don’t always know what will set it off,” Nancy explained. “Just towel-drying Charlie too rigorously after a shower can do it! And sometimes Charlie gets attacks just from a sudden shift between heat and cold. For example, his rash broke out from being in a hot tub in the winter,” something the family hadn’t expected. “He may grow out of it at puberty, or it may get worse. We’ll just have to wait and see,” Nancy said.
In the meantime he'll have MedicAlert.
