Parents of a Charge Child

Hello, welcome to “Our World”. This site could have probably more accurately been titled “in CHARGE of our world” Our entire family is featured here, but the site highlights a particular member of our family.Noah is now 7 years old. I began this site three years ago, when he was 4, in order to share the courageous story of my extraordinary little boy and also to increase awareness of a little-known syndrome, known as CHARGE syndrome. Noah has affected all of our lives in such a positive way. We are proud to be able to “show him off”


rare conditions

Lizzy’s life living with GA-1

I’ve had another fantastic weekend. The weather was amazing too. Back to school tomorrow I’m super excited about that. I’ve missed all my friends, my condition means I was born 1 in 40,000, my Mother does my Facebook page click the link below and visit me on the page.


ea-tef / tof-oa

EA – Vacterl

So I’ve been contemplating on what to do with this page. I want to keep bringing awareness to Esophageal atresia VACTEL association and I want to keep everyone updated on Liam. So I’ll update monthly or so on his health unless we hit a bump and I need to update sooner. I also think I may just let you guys see what we do day to day Liam stays home with me.

Tof-oa – Vacterl

Ruby’s journey, born on the Isle of Man, an island between the UK and Ireland. Her mother has uploaded many videos of Ruby with her lovely smile, Ruby is only 9 months old when I posted this link here, 06-06-2017. Ruby was born unable to swallow and has the condition called Vacterl.


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