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Theodore "Teddy"’s Story

Welcome to Teddy's CaringBridge site. Alexander and I originally created this site to keep friends and family updated on our little man’s progress as he battled Menkes disease. Unfortunately, my precious superhero passed away in my arms on 5 May 2014- less than two weeks after his first birthday. 

We continue to maintain this page and www.superteddyfish.com in an effort to spread Menkes awareness, as well as remember the bright-eyed beautiful little boy that gave us the greatest gift ever...him. While his 379 days on earth was short- he taught us- and so many others- a lifetimes worth of lessons. Before I tell you more about Teddy and Menkes, go hug your children. They are the greatest and most important thing in this world. 

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 was 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 had 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 was to surround Teddy with all the friends, family, and love possible during his time on this earth. We believe we accomplished that. 

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. 

To read more about our journey- please visit www.superteddyfish.com

I love you to the moon and back Teddy Fish, I'll never let anyone forget you.

#FUmenkes 

Latest Journal Update

For Sammy

http://www.superteddyfish.com/for-sammy/

For Sammy:

 

She was dumb and lazy. While the rest of us were workinglike dogs she was held up in her hotel room with “headaches.”  It was amazing; she always managed to makethe client-sponsored trip to NYC, yet once she got there, boom! instantheadache. I was sure she was touring the city, eating food paid for by herexpense account and doing none of the work she was suppose to. How do I knowthat? Cause we were doing her work.  While I stand by the fact that she was dumband lazy- there’s a point to this story that changed and touched my lifeforever.

 

He wore purple every Thursday. He walked a little slowerthan everyone else. He seemed to let everything roll off his back. He was moreexperienced, more talented, and more capable than his superiors- but he neversaid a peep.  He talked about hisdaughter like she descended from the sky- as a true gift from Gods. He was kind-heloved his wife, and believed in work-life balance. He wasn’t like the rest ofus- he was calm and just took things as they came. I liked everything about himexcept for the fact that he defended her. He would say things like, “you neverknow what’s going on in her personal life” or “wouldn't we feel awful if something really was wrong” or “I would hopeyou guys would cover for me if I needed it.” But I figured even the best peopleare entitled to their flaws- so we agreed to disagree.

 

We spent a lot of time together. Walking to and from ourhotel, waiting in airports, client meetings, dinners, and the occasionalBroadway show. We were friends, we still are. I enjoyed our conversations butit was one random topic that changed it all. We were talking about middle namesand his daughters came up for some reason. Her middle initial was “J” so naturally,I asked -  “Joshua” he said. So I askedhim, “who’s she named after?” He said, “my son.” I was stunned.

 

I guess I had always assumed he only had one child. He nevermentioned a son. But he had one, a handsome young boy who lost his battle tocancer named Joshua. And suddenly it all made sense. Defending her, taking lifea little bit slower, never wavering on his convictions. He was a man that knewlife, he had lived, experienced the very worst- and he had perspective none ofus could imagine. That conversation never left me. That boy Joshua and his dadSammy, never left me. May Teddy never leave you because he will never leave me.

 

I love you to the moon and back Teddy Fish, until we meet again- remember that.