Priya is a joyful, funny 4-year-old girl who likes to cook in her play kitchen and jump in muddy puddles. Like many other children, she loves being outside and running along the gravel driveway. Unlike those other children, however, the consequence of her taking a tumble isn’t just a few cuts that will heal in a few days. Priya has RDEB, so her skin is extremely fragile. A fall like that would cause immense pain, blistering, and skin stripped away from her body. As her parents, we worry about seemingly little things like this that can hurt her, but we won’t stop her from enjoying what childhood has to offer. After all, she’s just a kid.
When Priya was born, she didn’t have missing skin, and the only thing we noticed was some skin sloughing off in her mouth. We thought it was just thrush, and the doctor didn’t think much of it. But over the next 24 hours, more red flags began popping up. During a diaper change, skin came off when the nurse routinely cleaned Priya up and she kept getting unexplainable blisters. They suspected a Staph infection and transferred us to a different hospital. Priya spent 2 weeks on IV antibiotics. We then travelled to London, Ontario for 5 days. There, Priya was diagnosed with RDEB about a month after her birth and we were sent home to adapt to our new normal. Luckily, she hasn’t been admitted to a hospital since then.
Finding out your child has EB and all the care that goes along with it is overwhelming, scary, and life-changing, especially when they break the news that there is no cure. We live in a small town, but our family doctor had one other patient with EB, so he’s knowledgeable about the condition. We also attend the EB clinic at SickKids in Toronto, which EBRP funds, every 6 months to a year for a full schedule of specialists: the dermatologist, GI doctor, dentist, eye doctor - you name it. But if we ever find ourselves in an emergency room, we’re the ones that have to educate the doctors on what EB is and how to care for our child.
It’s so hard to witness Priya in pain, and even more difficult that we’re the people that have to inflict that pain. Changing her bandages and lancing blisters is necessary to keep her healthy, but it comes at a cost. No parent wants to make their child hurt and cry, but we have to. Even if there was a treatment that only lasted for a little while, we would take her anywhere to get it as often as we needed to. We are so hopeful for a cure for our daughter.
-Jamie and Jeff, Priya’s Parents