My Story

Welcome to Teddy's CaringBridge site. Alexander and I created this site to keep friends and family updated on our little man’sprogress. We appreciate your support and words of hope and encouragement during this time when it matters most.

A little past 4 pm on 14 November 2013 our world stopped. As four experienced doctors and a genetics counselor crammed into a small hospital room at Children's Inova in Fairfax, VA we were given the most devastating news possible. Teddy had Menkes disease, or "Kinky Hair Syndrome." Prior to the official diagnosis, we had heard whispers of the word that no doctordare say aloud yet ample time to google it. No matter what site you visit, you quickly learn that our precious boy’s time here on earth is limited. Menkes affects copper levels in the body due to a genetic mutation of the ATP7A gene.  Babies with a typical case of Menkes do not live past three years. Teddy has a typical case.

Alex and I, with the support our amazing families, made the decision to immediately pack our stuff and head back to Boston, Massachusetts. Our goal, today and every day, is to surround Teddy with all the friends, family, and love possible during his time on this earth. We ask that everyone make today happy for Teddy, he deserves it.  

While this has been a horrible road to diagnosis, we now know what we are dealing with. And in a weird way, we have the benefit of knowing that we have to cherish every single moment.

A lot of kind people out there that are looking to help. I ask that you PLEASE share Teddy's story. Menkes has no cure, but it does have a copper treatment program that provides hope if diagnosed early. While it is too late for Teddy, I want every other family hit with this tragedy to have hope. Teddy is the message, but we need your help delivering it. Please post his story on Facebook, share on Instagram, tweet #FUmenkes, email friends and family. Tell anyone you can. If you see a baby with kinky hair- think of menkes. I would rather rule it out for every kinky-haired baby than miss a crucial early menkes diagnosis. 



Mary Fish posted a new journal entry, "Our Day".

To read my latest journal entry, please visit www.superteddyfish.comAnd please, on this Sunday, Teddy's favorite day- tell someone about my Nugget. Tell them about Menkes ... Read more

Mary Fish posted a new journal entry, "Yup, i'm a nut.".

If you want to read about my craziness, it's posted on Read more

Juliet signed Theodore "Teddy"'s Guestbook.

I praise what you are doing and your outlook.  My story is similar with my little guy, Sam who passed away at 11 months from Menkes disease.  We loved every minute he ... Read more

Mary Fish posted a new journal entry, "Please, Just Don't Ask.".

I have posted a new journal entry to www.superteddyfish.comLove you to the moon and back Teddy Fish. I will never let anyone forget you.  Read more

Mary Fish posted a new journal entry, "Please help!".

For those of you that do not know, my precious baby boy passed away on 5 May 2014 from Menkes. He was the greatest superhero that every lived and ever will. I have posted ... Read more

Patrick Ryan signed Theodore "Teddy"'s Guestbook.

Mary & Alex,Thinking of you! I've been praying for Teddy and family every night since I heard the terrible news. For the past 6 months I have been asking God for some ... Read more

Shayla signed Theodore "Teddy"'s Guestbook.

Hey Mary, Sending you and the family my prayers and condolences during this difficult time. Teddy's life will continue to make a difference. Read more

Mary Fish posted a new journal entry, "".

I have posted my first journal on hope you'll continue to follow there as well as leave your comments in ... Read more

Mary Ann & family(Joanie's College Roommate) signed Theodore "Teddy"'s Guestbook.

Just want you to know that we are sending out prayers and love to Teddy & all of you.   I had never heard of Menkes so thank you for being so open and well spoken ... Read more

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