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Theodore "Teddy"’s 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. 

#FUmenkes https://www.giveforward.com/fundraiser/r3t3/teddy-fish-fund

Latest Journal Update

A handbook would help us both....

I have created a new journal entry about dealing with uncomfortable questions:  http://www.superteddyfish.com/journal/a-handbook-would-help-us-both/


I love you to the moon and back Teddy Fish. I’ll never letanyone forget you. 

Comments

1 Comment

Danita Daniels
By Danita
Mary, please call or text me when you get a chance. Been trying to reach you. 2566792016