It's called the worst disease you've never heard of. Which is why a Puslinch family is sharing its experience with epidermolysis bullosa to raise awareness and funding for treatment.
Greg and Lindsay Wand welcomed their second child, a daughter named Wrenleigh, on Feb. 12. Right away, Lindsay said she noticed her daughter was born without skin on her fingertips.
"I just kind of thought, 'Oh, maybe she has a weird birthmark or something,' because they weren't bleeding, they were super red and raw and obviously, you don't think the worst when a newborn baby comes out," said Lindsay. "After a few hours, she wasn't settling and she had a really weird cry, and she was really not happy.”
"Right away, her first diaper change, I pulled off some skin on her bum and it was in that instant, from there, it went full throttle."
Within 15 hours of her birth, Wrenleigh and her family were transported to SickKids. Two weeks later, Wrenleigh passed away on Feb. 27. Genetic testing confirmed Epidermolysis Bullosa, or EB.
EB is a rare genetic condition causing blisters on the skin which leave slow healing wounds. Due to their skin, children diagnosed with EB are often referred to as 'butterfly children.' Wrenleigh was diagnosed with the most severe type of EB called junctional herlitz, which affects every three per million live births in the United States.
EB is also an autosomal recessive disease, meaning children with EB receive the gene mutation from both parents. Lindsay said they learned that each person comes with six to 10 gene mutations, which accounts for half the gene for EB. They both note they got lucky with their two-year-old son Walter.
"With most people, the gene doesn't come out because their partner probably doesn't have the same matching number, but that's why it came out in us, because Greg and I did end up having the matching gene mutation," said Lindsay, "which is crazy, because he (Walter) had a one-in-four chance of having it."
"We're both healthy people, our families are healthy, it's not like we had anything else," said Greg.
While the Wand family can only speak on their experience of losing a child to EB, Lindsay points out EB is a different struggle for families when their child does survive. Currently, there is no effective treatment or cure for EB.
"They're just in pain and it changes their whole lifestyle, and it's just super hard," said Lindsay.
"Parents in Canada are still paying for the Band Aids that their kids need, if they don't have insurance, or the meds that they need, or their resources."
Now, the Wand family has created Ride for Wrenleigh to raise money for research and treatment of EB.
"In life, you want your kids to make a difference in the world, so by doing this event and raising money for people with EB, or who have lost people from EB, it's her way of making a difference," said Greg about why they created the fundraiser.
On Sep. 10, the event will kick off with a three hour motorcycle route followed by live music and events. Lindsay and Greg both ride motorcycles, and prior to the event, Greg was using his motorcycle for fundraising events.
"With the motorcycles, we made these t-shirts, and everyone on the ride is going to have t-shirts, and we made a banner, and the banner will follow us too, and obviously, like people are going to look at 35 motorcycles and see the t-shirts," said Lindsay.
Expecting 50 to 100 people to show up, the event now has 300 people registered. Lindsay notes they're getting so much support for Wrenleigh and future EB families.
"And after this event, she'll have been able to donate at least over $15,000 and she would've been six months now, and that's a lot more than what people would've done in their lifetime," said Lindsay.
The event has also surpassed its original fundraising goal of $15,000. The money will go to DEBRA Canada, the SickKids Foundation and MiaThrives.
MiaThrives has resources which first helped Lindsay and Greg understand EB. The organization also helped connect Lindsay with another mother from the United States who lost her baby to EB.
"I'm able to communicate with this woman who has been in the exact same situation as me, and we can share how we're feeling that day, what we've been struggling with that day, and that's been a really nice thing MiaThrives has been able to do, connecting me with her."
Lindsay said the worst thing to go through is losing a child, but she and Greg have supported each other and leaned on the support of their family and friends.
"For us, we're both super strong and stubborn people and we don't usually ask for help, but we've had to lean on each other, lean on our family and our friends, and everyone has been so supportive, and I think a lot of times, people forget that they do have a lot of people out there looking to take care of them and support them."
Besides the fundraising event, Greg and Lindsay will also be appearing in a video and podcast with MiaThrives.
"We want her story told so that people remember that she was here and that she was a person, and that she means a lot to us," said Lindsay.
"And not just us, her family as well," adds Greg.
Residents can also make a donation in Wrenleigh’s honour to either MiaThrives or DEBRA Canada.
