Thursday, January 16, 2014

A fellow blogger, Alex, emailed me a couple days ago sent me the following email. What she wrote just devastated me. But instead of forgetting about it I decided to share it with you all in hopes of raising awareness of Menkes Disease. If this ever happened to one of my children I would want someone to do the same. Get out your tissue...

Alex writes:
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. Your blog is exactly the audience who needs to hear Teddy's story.

Mary created a CaringBridge page (http://www.caringbridge.org/visit/theodoreteddyfish) 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 at http://www.caringbridge.org/visit/theodoreteddyfish 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 her story deserves to be shared.  

Thank you for your support!


I hope this encourages some of you to check out his website. It definitely did for me and as a mother I think it is important to educate yourself on things that could affect your child. Give your kiddos extra kisses today and always! I sometimes forget how blessed I am to have a child who has tantrums and bad days because in reality it's another day I get to spend with her and not everyone else is so lucky. 


  1. Thank you so much for sharing this! My cousin/close friend's son also has this disease. He was diagnosed very early (just a few months old) and began getting copper treatments right away. He is now 6 years old and doing FANTASTIC! We know he is not the norm, but there is hope. We will pray for him and I'd be happy to point Mary to The Menkes Foundation (we are very familiar with them), as well as another family who can relate. It breaks my heart to hear of another innocent, perfect little boy struck by this.

  2. Thank you for taking the time to share this, I am a friend of Alex and Mary's. I am so grateful that there are kind people like you, willing to help spread Teddy's story!

  3. Every mother can relate to Mary's journey. Thank you for sharing this beautiful family's story. It has touched so many of us. Teddy is indeed "super" and he has the most beautiful parents in the world.

  4. Oh my gosh. Thank you so much for sharing this with us. I can't even imagine the strength Teddy's parents must have to be living a happy life with him for theses next three years, all the while knowing the end of the story. I can't believe there is little that can be done for that sweet little boy. Prayers to him and his lovely family :)

  5. Ugh, this just breaks my heart. I received a similar email from Alex and definitely want to do everything I can to spread the awareness. :(


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