Child with Epidermolysis Bullosa Lives Happily Thanks to Supporting Family and Community

According to a story from The Squamish Chief, mother Emily Tomlinson is amazed by the capabilities of her three year old son Nash Smillie. Nash was born with a severe rare disease called epidermolysis bullosa (EB) which causes extremely fragile skin that tears easily. The doctors told Emily and Nash’s father Kevin Smillie that the boy’s life would be severely limited and that he wouldn’t have a typical childhood. However, Nash appears to be defying the odds.

About Epidermolysis Bullosa

Epidermolysis bullosa is a group of genetic conditions which are most characterized by unusual blistering of the mucous membranes and skin. These painful blisters can occur with only minor friction or abrasion. The disease can be fatal in severe cases. These disorders are all caused by genetic mutations; the various subtypes of epidermolysis bullosa are classified by which genes are affected. Painful mucosal and skin blisters are the defining symptoms, but other complications may include esophageal narrowing and a vastly increased risk of skin cancer. There is no cure for the condition; treatment primarily focuses on symptom management, such as controlling pain, cleaning wounds, prevention or treatment of complications, nutritional support, and controlling infections. Males and females are affected at equal rates. The disease can seriously shorten lifespan, and in severe cases, patients do not survive beyond infancy. There is a dire need for more effective treatment approaches for epidermolysis bullosa. To learn more about these disorders, click here.

Nash’s Story

Nash’s doctors said that one thing that he wouldn’t be able to do is go swimming. The parents were warned to never take him to a lake or pool. However, Emily and Kevin wanted to try their best to give Nash opportunities to push his limitations. As it turns out, Nash took to swimming very naturally and it is currently one of his favorite things to do; best of all, it doesn’t seem to have any negative effect on him. Clearly every patient with epidermolysis bullosa is not the same.

Emily has learned some helpful tricks from the patient community online as well, such as using sheepskin under athletic clothes. Nash also attends preschool full time, another milestone that physicians weren’t so optimistic about. The family has also received support from Cole Smith and Jamey Horth, who are two local MMA fighters that have been spreading awareness about epidermolysis bullosa. 

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