My son Leo, always tackling the impossible.
Did ya know that February is Rare Disease Month? And that this year Rare Disease Day, falls on the most rare day of all, February 29th (get it...cuz it's...a rare date...see what they did there???)!
This little man above on the bike, that has always had a much bigger and braver spirit than his age, is my own little poster children for rare disease. He's got what we call an "unspecified auto inflammatory syndrome." Basically, he has a genetic mutation that causes his body to attack itself, much like the more commonly known autoimmune diseases, except his is part of his DNA. The doctors at CHOP believe he has one of the Familial Cold syndromes, meaning that cold is a trigger for his flares. He underwent genetic testing last week to try and narrow down the gene that causes his painful flares (zoom in real close, and you can see how his skin looked for about 2 years of his life-- on a mild day). He's had days he couldn't walk. Days his lips were swollen. Nights he cried in pain and scratched himself until he finally passed out from exhaustion. Years of questioning what was happening and if I was losing my mind trying to find what was causing this. Years of anxiety and heartbreak of bringing him out in public because people would pick up their kids and walk away from us because of how he looked.
It's not easy going through this, for him that's for sure, but also as his parent. The uncertainty of it all. The lack of research. The lack of even a proper diagnosis at this point, and maybe even until genetics advances more in this field. Fortunately, a monthly biologic injection has greatly improved him. Unfortunately, he's a 3 year old on a monthly biologic.
I know the toll that parenting a child with a rare disease takes on you.
But I also know the intense joy in the wins, the thankfulness for the good days, and the utter admiration you have for your child's strengths. And how it bonds and forms you as a family.
On Rare Disease Day, February 29th this year, I'll be doing a family session giveaway to a family with a child affected by a rare disease. Feel free to comment below, tag, or share with someone that has a child affected by a rare disease. I'd love to help celebrate your child & family, bring about awareness and share your story to shed light.
Giveaway Details:
You may nominate someone else or your own family that has a child affected by a Rare Disease.
60 minute session to take place in March 2020 and will be in a location within 10 miles of Philadelphia, PA. Will include a gallery of 40+ digital images with print release via digital download.
I would love to be able to share images from your session to be able to bring more awareness of rare diseases.
Winner will be drawn entirely at random on February 29, 2020.
To enter, comment either on blog post below sharing a bit about your rare disease story or on my social media pages about this giveaway