Friday, February 14, 2014

One on Friday

Instead of Five on Friday, I am sticking with one. Because I cannot fathom anything more important than a story of a sweet, angel baby that I am about to share...

This post probably doesn't need an introduction for a lot of you, but for many it may. Today, we are uniting to spread awareness and share the love for Teddy Fish, who is fighting Menkes Syndrome. If you are like me, you have never heard of Menkes Syndrome. Unfortunately, when there is something health related you have never heard of, chances are the outcomes of those affected are anything but what you would want for a loved one. Funding and research is small. For Menkes, it is no different. 
Here is Teddy's Story, given by a friend of Teddy's parents... Alex {Pink and Prosperous}

"On November 14th, Mary and Alex Fish were given the most devastating news a parent could ever receive: their seven-month-old son, Theodore, who is affectionately known as "Teddy,” was diagnosed with a terminal syndrome called Menkes. Menkes Syndrome affects approximately 1 in 450,000 male babies. There are currently only a handful of documented cases in the entire United States that specialist, Dr. Stephen Kaler, is studying at the National Institute of Health.

Mary created a CaringBridge page (here) as an outlet to both update family and friends about Teddy's health and to spread the word about a relatively unknown syndrome, which currently has no cure. Their journey is documented almost daily by journal entries written by Mary, who as you will quickly learn, is an incredible mother. Every entry she writes is a reminder of what it is to be truly selfless, acting with only your child's best interest in mind.

Teddy was dealt the most unfair hand, but he is so lucky to have quite possibly THE most amazing parents. Teddy's story may not be able to save other babies who currently suffer from Menkes, but it could create awareness and eventually lead to a cure. It could also empower mothers to trust their guts when they know something isn’t right. Because the syndrome is rare, many doctors dismissed her concerns about her child’s symptoms (such as distinctly kinky hair) because they lacked knowledge of Menkes."


I follow Super Teddy on instagram ( @superteddy423 ) and he is one face you will never forget. He is a complete angel. His smile could light up an entire room. Something I have never shared on my blog is some health concerns we have faced with our own sweet boy (pictured with me above!!) but we are finally starting to get some answers. I'm sure I will share in the future, but today is all about Teddy. I have discovered I am one tough Momma and I will fiercely protect my child and love him like I never thought was possible. Another thing I do know is that when your baby is sick, there is nothing that a mother (or father) would not do for their child. And there is no tougher position to be in than to watch your child suffer from something, no matter how great or small. So please keep this family in your prayers. They need strength in tough moments. They need someone to pick them up when their world is about to fall apart. You never know when you may become someone that needs these prayers. I promise you that. 

And because today is all about LOVE...Happy Valentine's Day! No whining or complaining if you don't have a Valentine. Give someone...anyone, you LOVE a big hug and kiss, and be THANKFUL for them. XO.


caycee said...

Crying over here...breaks my heart!

Sundresses and Smiles said...

Such a good cause...thanks for sharing!

April of A. Liz Adventures said...

Katie, so beautifully said. A parents love knows no bounds. Teddy is lucky to have his loved ones around him and so is cutie pie Weeks!

Courtney Wilson said...

Team Teddy all the way! He is adorable!! :) Thinking of you and your boy for what you are going through...

Have a great weekend!

Ashley @ Words About Waverly said...

Love your post, I also chose to do just ONE today, Teddy!!!! :)

Happy Valentines Day to you!

Hope @ Hope in a Blog said...

finding you through the linkup...excited to start following you on GFC. Team Teddy <3! Happy Valentine's Day! Xx.

Chrissy@SimpleJoysBlog said...

Visiting from the link up. Love your team teddy photo!