Learning about Rare Diseases on Rare Disease Day :: Andover MA Photographer

I’m sure for many of us, we have no idea that Rare Disease Day is a thing. But every year on the last day of February, it is Rare Disease Day. This year, that means it is on February 29th. The rarest date since it only happens every four years. A perfect date for this event, no? For me, I would have had no idea about this date if not for the little guy on this blog post. Quinlan was born to first time parents Lindsay and Bear Weekes in August of 2014. I got to photograph him in his early days and a few other times throughout his much too short life. He was diagnosed with a rare disorder, a mutation of the Brat1 gene, when he was just over one year old. This diagnosis came after months and months spent in the hospital, never having an answer to so many questions about his health.

Quinlan’s disorder, which is actually so rare it doesn’t have an easy name to call it, caused Q (as he was called) to have a microcephaly, subclinical seizures, and respiratory issues. Sweet Quinlan lived for two years, 5 months, and one day. His family, especially his mother, has worked tirelessly to keep Quinlan’s memory alive. And this means helping to raise awareness. Not only for Quinlan’s own very rare disorder, but for rare disorders in general. Today, Rare Disease Day, feels like the perfect day to highlight this special family.

What is A Rare Disorder?

So, I’m sure you might be thinking “what exactly counts as a rare disease?” The National Organization for Rare Disorders has so much information for anyone who isn’t familiar with the rare disorder/disease world. But I’ll give you some facts to get your search started. A rare disorder is classified as anything affecting fewer than 200,000 people. And at the moment there are more than 7,000 rare disorders recognized in the USA. These include all pediatric forms of cancer and as many as 500 other types of cancers. And more than 90% of rare diseases have no FDA approved treatment. Even more shocking, some rare diseases and disorders aren’t even listed in the registry provided by NORD. Quinlan’s disorder, for example, is so rare that the list does not include it. At the time of diagnosis, his parents were told he was only the seventh known case–in the entire world.

We call them Rare diseases and disorders because they are rare. But the truth is, they affect an estimated 350 million people worldwide. So while each disease or disorder is rare, the category as a whole is not. Which is why it’s so important, today on Rare Disease Day and every day, to raise awareness and talk about rare diseases.

The Rarely Normal Podcast

Quinlan’s mom, Lindsay, and her lifelong friend Katelyn have recently started a podcast. On this podcast they talk with other parents affected by rare diseases, disorders, and child loss. The medical providers that treat them. And the family and friends that support them. The podcast is Rarely Normal and you can listen on Spotify and Apple Podcasts. You can also give them a follow on Instagram and Facebook. It would mean the world to me, my team, Lindsay, and so many more if you gave it a listen.

Thank you for acknowledging Rare Disease Day with us. At Crabapple Photography we strive to make every client feel a part of our family. This includes supporting them in whatever way possible. We are located in Andover MA and our photography family comes from all over the state. Kate McKenna has been photographing newborns, babies, children, and families since 2009. If you would like to join our Crabapple Photography Family, Contact Kate today.