This week, we (as in April, Christina, Darci, and I) are challenging all of our Five on Friday participants to do something a little bit different. This week, we’re wanting to spread the word about Super Teddy and that gorgeous boy with the contagious smile.
I’m sure you’ve seen Teddy’s story featured on other blogs lately (In This Wonderful Life, Style Me Swanky, and others as well), but for those who haven’t heard about this little superhero, here’s a little bit of info:
Teddy is the son of Mary and Alex Fish, and he is 10 months old (look at that sweet angel). Just this past November, he was diagnosed with Menkes Syndrome, also known as “kinky hair syndrome”, a rare genetic disease that affects approximately 1 in 450,000 male babies. It is a terminal disease and there are currently only a handful of documented cases in the entire United States.
Mary’s friend Alex (from Pink and Prosperous) reached out to a lot of us bloggers asking for one thing…for us to share their story so that we can create more awareness about this horrible disease. It receives little to no medical attention or research funding and I am hoping that we can all jump in and help them.
Mary created a CaringBridge page to update family and friends about Teddy and to spread the word about Menkes, which currently has no cure. You can tell Mary is one incredible mother, a selfless parent who will do anything and everything she can for her sweet baby. Mary and Alex’ goal is to create awareness and to hopefully find a cure.
Even more importantly, friends of the Fish family have set up a fundraising site to help alleviate some of the financial burdens of Teddy’s sickness, as they have packed up and are now living in Boston full-time as they care for their miracle man. If you would like to donate, you can do so here. (Caroline and Carson did!)
So here is where we need your help… if you follow Teddy on Instagram or Facebook, you might have noticed that friends and followers make signs that say “Team Teddy” and then post them each week. They have had some big celebrities, athletes, and other famous peeps join in (Kristen Bell, Cam Newton, Lady Antebellum, etc) and we want to do the same to show our support.
So for this Friday’s link-up, we are asking that your first picture be a Team Teddy sign. Get creative! Use your kiddos, use your spouses, take a picture in a fun place, whatever you find…but let’s all link-up for Teddy and bring awareness to Menkes so we can find a cure.
I know it would mean a lot to us and hopefully bring a smile to Mary and Alex as well. We heart you Teddy!!