CHESTERMERE – When Carrie Lentz took her maternity leave from the Chestermere RBC Branch, she was expecting the same go-around that she had with her first son, Jackson.
However, when her second son Jonah was born with a rare genetic disease called albinism, she realized things were going to be a little different.
As soon as she noticed how fair his skin and hair was, Lentz went online and found information about albinism on the website for NOAH (The National Organization for Albinism and Hypopigmentation). NOAH is a US-based non-profit organization that offers information and support to people with albinism, their families and the professionals who work with them.
Lentz said that she came home from the hospital, emailed NOAH immediately, and they sent her a care package, including a book about albinism.
“They were fantastic and helpful,” Lentz said. “It gave us a chance to learn all about it, and the book they sent was great to have because there’s little to no literature to be found about it here.”
Lentz said that she was able to learn the basic information about albinism, like the fact it only affects one in 25,000 people, but that she was also able to find out more information about the genetics behind the disorder.
However, because the organization was US-based, Lentz said that it was hard to get some questions answered because of the differences between the health care and education systems.
So, driven by her experience in business and with other non-profit groups, the Chestermere resident decided to start a Canada-based NOAH organization.
“I was surprised that there wasn’t already a Canadian group,” she said. “NOAH supports Canada and everything, and they said that they had been looking for someone to get it going, so they’re in full support of us.
“Having a Canadian group will be awesome because we’ll able to offer support and info close to home.”
Lentz said that they now have a board made up of ten people from across Canada, including a couple from Toronto who both have albinism. She said that the group is officially registered in Chestermere.
“Service Alberta has good programs for non-profits so it is great to have it registered here,” Lentz said. “We’re still in the overall approval process, but there’s no other albinism organization like this in Canada, so we’re confident that we will receive approval.”
Lentz said that just the thought of being able to help a family the way that NOAH helped her is what drives her.
“The additional comfort of it being a Canadian organization will just be a plus,” she said. “We’re going to have info for anyone who needs it: people with albinism, families who are dealing with it, and businesses who might have to deal with it.
“It will be good to be a resource, and it will even have info available for medical professionals as well.”
Lentz is positive about NOAH Canada in the same way she is positive about Jonah’s future.
“As far as genetic disorders go, it’s a good one,” Lentz said with a smile. “The biggest challenge with it is that they’re visibly different which can lead to teasing and those kind of things.
“We’re going to focus on educating him about it and making sure he always has confidence going forward, because people with albinism grow up to lead normal productive lives.”
There will be a fundraiser for the Canadian-based NOAH group in Strathmore next month. Check upcoming issues of the Anchor Weekly for more info.
