SUPER TEDDY

Friends, this blog is my happy place.  I've connected with so many amazing women and mothers.  I love sharing pretty things and snippets of my life.  But I would be missing the entire point of having a platform like this if I didn't allow others to have a voice here as well.  I know the love and support that pours from this community, so I am asking you to take a moment and read the following...

I am brought to tears by a family that is struggling...they have an 8 month old son who was recently diagnosed with Menkes Syndrome.  This baby will not live to see his third birthday..and there's nothing to change that.

This beautiful baby boy, affectionately called "Super Teddy", by his mom, cannot be saved.  But his parents want to educate everyone possible about this syndrome, also known as "kinky hair syndrome".  His mother has set up a page to follow Teddy's progress and how they are coping.  You can find it here. 

I want to include this journal entry from Mary {Teddy's mother} to really illustrate what this syndrome is all about and why it's imperative that we are all educated on the signs:

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We never intended on calling him Theodore but knew he needed something proper for college and job applications. My Mom told me no adult would ever want to be called Teddy, and even though we agree to disagree, we always knew he could transition to Theo or Ted if he wanted to later in life (assuming she was right, but she's not). But he's more than Teddy- he's Daddy's "Teedler/Teedlet," Nana Coffey's "Teddy Man,"  Auntie Amanda's "Tedward," Uncle John's "T-man,' and Auntie Jen's "Ted-a-dore." But to me, he's SUPER TEDDY. I started calling him that because every time Alex would hold him in the air he would open that massive Steven Tyler mouth and giggle. It makes me laugh every time. 

And it's going to be Super Teddy and his adorable little face that brings awareness to this horrible disease.  And I now know how I'm going to make a difference. Because even through this disease effects one in a million, that one doesn't deserve it. And that one deserves a fighting chance. Teddy deserves a chance but will never get it. Had his doctors known the symptoms, seen the signs, we may not be in this situation.  Sure, Teddy exhibited normal behavior/ progression until eight-weeks or more, but the physical symptoms were there from day one. It is called kinky-hair or steely-hair syndrome for a reason. Teddy's hair was kinky. Teddy's hair was also "silver." And the worse part about it, every single doctor commented on it. They would touch it and laugh- they all thought it was "cute." Sure it was cute, but it was also symptom #1. If just one of those doctors had said, 'hey- this is different, doesn't really fit the profile of your family' Teddy could have started copper shots early. He could have been one of the cases Dr. Kaler could help- not just another statistic that will die before his third birthday. I don't blame these doctors, but that doesn't mean I'm okay with things staying the same way. 

And while most pediatrician's will go their entire careers without seeing a menkes boy- statistically, at least a few will have to- and sadly most will miss an early diagnosis. I want to change that. I want every pediatrician and nurse to look at a boys hair as not just hair- but a warning sign of something potentially more. I want every pediatric GI referred a boy with sever reflex to look at his hair and consider the unfortunate. I want every ER doctor looking at a baby boy refusing to eat and think of menkes before telling his parents that he will grow out of it, or that he will eat when he's really hungry. My awareness needs to start with medical professionals, because early diagnosis is the only way to give hope.

Of course I will need to raise money to do this. And I want to start by hosting an annual "Superhero Dash for Kids" and "Superhero 5K for Adults."  Naturally I will want to hold it on Teddy's birthday- the most super day of the year.  Kids will have to dress up as superheros or really cute super fairy's. Winners (or all kids) will get superhero capes / tutus. And when this time comes, I will be reaching out to all of you and asking you to put on your running/walking sneakers or at least emailing all of your generous friends. I even know a really great magician that I can hopefully talk into coming for a good cause.  Until then, I'm going to focus on loving my little boy every second of every day.

It makes me sad to write about Teddy's decline. He's not great. He's not improving. He's never going to get better. But he is SUPER. Super cute, super sweet, super innocent, super smiley, super amazing. He's also super inconsistent,  super tried, and super fussy- but those are not the supers we focus on. Instead, we focus on making sure Teddy is SUPER LOVED.

I love you to the moon and back Teddy Fish.  I will never let anyone forget how super you are.  

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Please, I urge you to educate yourselves.  Educate others.  Read Mary's journal entries and help support her by spreading the word.  Mary put it best, "...even through this disease effects one in a million, that one doesn't deserve it. And that one deserves a fighting chance."

xo natasha