Prayers for Teddy

I had originally had something else to blog about today, but when I saw an email come through last night with this story, my plans changed.

Yesterday, I received a message from Alex who writes over at Pink & Prosperous regarding a baby named Teddy who was recently diagnosed with a very, very rare disease called Menkes Syndrome. As a mother of an infant, I cannot fathom what this family must be going through. I don't want to misstate anything, so I'll let you read Alex's words below:

I am writing with a heavy heart to share the story of a dear friend of mine with an 8-month-old son who is going to die before his 3rd birthday from a rare genetic disease called Menkes Syndrome, also known as “kinky hair syndrome.”

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.  

Her answer every time to the question of “What Can I do to Help?" is “Spread the Word,” So, I am reaching out to you in hopes that you will help me spread the word through your blog to create awareness about this rare syndrome that receives little to no medical attention or research funding. 

Mary created a CaringBridge page 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.

If you could please take a moment to visit Teddy's Caring Bridge page here you’ll see pictures of sweet Baby Teddy, Mary and Alex and can read Mary's updates on their daily life and Teddy's health. You’ll see why Teddy's story deserves to be shared.  

Thank you for your support!


If you have a moment today, please say a word of prayer for this little baby and his parents. Also, if you'd like to share this story on your own blogs or even link to this post from your Twitter or Facebook posts, that would be amazing.

Thanks for reading, y'all.


  1. What an amazing post. I follow Alex and read her post last month about Teddy and have been following the caringbridge site ever since. Mary is an incredible strong woman and I can't imagine what she is going through. Thank you for sharing!

  2. I am a friend of Mary and Alex's and I would like to thank you so much for taking the time to share this with your readers. It is so awesome to see such wonderful people willing to help spread Teddy's story!

  3. Leslie, Thank you from the bottom of my heart for sharing Baby Teddy's story with your readers.

  4. With my own precious 8 month old at home, my heart is literally breaking for sweet Teddy and his family. Thoughts and prayers are going out to them today.

  5. Thank you for sharing this story. My dad also passed away a little over a year ago from a rare, currently incurable disease, Creutzfeldt Jakob Disease (CJD) so I also share the passion for wanting to spread awareness for research and eventually a cure for such diseases. The awareness can't go back and help my dad but it can hopefully spare some other family from experiencing what we did. Thanks again for having the heart to share this story. I'll be praying for Teddy!

  6. Sending this sweet family so many prayers. xoxo

  7. wow, I am praying for this family and following this story

  8. Leslie - Thank you for sharing this story and helping to increase awareness! It is amazing to see the love and support of others.


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