Like most little girls, Tatum Blackwell likes chocolate, Scooby Doo, driving her jeep, camping, everything Cody Simpson and Justin Bieber, her friends, and her cousins. Unlike most little girls, Tatum was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB) - a rare condition in which the skin and mucosal lining of the body (such as the oesophagus) blisters or tears at the slightest knock or rub. As the skin heals, it almost always scars. This year we discovered that Tatum's oesophagus has narrowed due to scarring, and in a few weeks she faces a dilation that may allow her to eat solid foods once again. This procedure requires her to be put to sleep and most likely only offers temporary relief.
Tatum might lose mobility in her hands and feet. She is also at high risk for metastatic squamous cell carcinoma, a skin cancer that is the most common cause of death for people with RDEB, usually between the ages of 15 and 35.
Tatum's condition is genetic; therefore, it will never get better. So we take our days one at a time, preventing blisters or trying our best to quickly heal them, which includes nightly bandage changes to her entire body.
But even walking with blisters on both feet every day and feeling pain with every step, Tatum still smiles, laughs, dances, and plays because, first and foremost, Tatum is a happy-go-lucky little girl who teaches everyone around her that strength comes in all sizes.
Check out Tatum's very own blog for tons of photos.
Where: Pinafore Park Dance Pavillion, St. Thomas Ontario
Tatum started this awareness walk when she was only 4 years old. She had met other children with EB and said she wanted to do something to help them. It was close to Halloween so she said she wanted to trick-or-treat for donations. That night she raised almost $500.00.
So come support an awesome little girl and a great cause.