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Who would you turn to if your child was born with a rare condition?

August 6, 2015 By katbiggie 4 Comments

Avery

When Christy Cook was born, 50 years ago, her esophagus was not connected properly to her stomach. She had to have 22 surgeries to get everything right! She was 4 years old when she was finally able to eat food like other kids her age! The condition she suffered from is called Esophageal Atresia (EA/TEF), and according to the National Institutes of Health, is rare. It occurs in about one in 4,000 births.

EA/TEF is Esophageal Atresia/Trachea Esophageal Fistula is a condition from birth, which is an abnormal or non existent connection between the esophagus, the lungs and the stomach. One in 3000 to 5000 babies are born annually in the United States with this birth defect and one in 10,000 worldwide.

Most cases of EA/TEF are not prenatally diagnosed, but an OB/GYN doctor may recognize these signs during pre-natal exams:

  • small stomach, no stomach, or no stomach bubble
  • high levels of amniotic fluids
  • connection to vessel cord irregularities

When babies are born with EA/TEF, they can have other birth defects such as the following:

  • heart defects
  • digestive tract disorders
  • kidney & urinary tract conditions
  • muscular or skeletal situations
  • VACTERL Syndrome
  • Trisomy13, Trisomy18, Trisomy21

Fast forward to 2013. I had never heard of this birth defect. Of course, if you know my story, in 2013 I was just finally pulling myself together again after the loss of one of our twin daughter’s to TTTS and my surviving twin’s long NICU stay. I was highly in tune whenever I heard news that a friend delivered pre-term or had any issues after birth. I remember hearing that my friend Betsy had had her baby girl, and they were in the NICU because something was wrong. Sweet Avery had been born with Long Gap Esophageal Atresia  – EA/ETF.

Avery baby

My friend Betsy and her husband, as well as their friends and family, had never heard of this condition. As they began to research, they found Christy’s Courage.  Betsy says:

At the time Avery was born, we knew very little about the condition and didn’t know anyone else with it. Christy’s Courage was our shoulder to cry on in the early days and also put us in touch with Avery’s surgeon, Dr. Jennings, who ultimately repaired Avery.

 

Christy's courage

Christy Cook started a foundation called Christy’s Courage because she remembered how isolating EA/ETF was for her family. She wanted to be able to connect other families facing this diagnosis and provide them with friendship and help.  The mission of this non-profit based here in Charlotte is to help EA/TEF clients with their specific needs for the betterment of their lives, their families and caretakers.

“I feel like I”am doing what I was meant to do,” Cook said.

 

neely

Avery – getting bigger!

Betsy wanted to do something to help Christy’s Courage, since this organization has done so much to help them through this. So, she has a Jamberry fundraiser going on this month. 30% of sales are going to Christy’s Courage to support their important mission.

We want to help raise money for Christy’s Courage so they can continue to help other families like ours. EA children are some of the toughest kids I know! They endure so much when they are so little and some continue to have problems for life. Help us raise some money for Christy’s Courage, so they can continue to help make lives a little easier for these children and their families.”

You can support Christy’s Courage by shopping through the Jamberry fundraiser

toes

 

shake a tail feather and atlantis

blue floral

juniors 2

mud bud

mustach

number one design in April

 

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katbiggie

Freelance writer at Kat Biggie Press
Alexa B, who blogs as "Kat Biggie" is a wife, mother, and writer. She has three children and one in heaven. She recently self published a book entitled "Sunshine After the Storm: A Survival Guide for the Grieving Mother" which is available on Amazon. She blogs about life after the loss of one of her twin daughters to TTTS, motherhood, all things parenting, advocacy, grief support and social good.

Latest posts by katbiggie (see all)

  • What to say when a baby dies ; words of comfort - October 31, 2019
  • Try listening to her, not fixing her – October 15th - October 15, 2019
  • Pregnancy & Infant Loss Awareness Book Bundle - October 3, 2019

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Filed Under: Children's Health, Do Good Feel Good, Newborn Health Tagged With: children's health, EA/TEF, fundraising, non-profits, rare diseases

Comments

  1. Janine Huldie says

    August 6, 2015 at 4:37 pm

    Aw, what a wonderful cause and thank you Alexa for sharing here. Seriously never heard of this, but will totally share too to help.
    Janine Huldie recently posted…5 Firsts This Mom Would Love To ForgetMy Profile

    Reply
  2. Shann Eva says

    August 8, 2015 at 12:52 pm

    What a cutie .I’m so happy the family found support through this great organization.
    Shann Eva recently posted…Guest Post – The Second BabyMy Profile

    Reply
  3. Chris Carter says

    August 9, 2015 at 12:12 pm

    OH what an amazing story… I can’t imagine going through so much without any support! I just love it when people find their mission through their own painful experience- to help others find their own way through it too.
    Chris Carter recently posted…Wait. Where Did Summer Go?My Profile

    Reply
    • katbiggie says

      August 11, 2015 at 11:22 am

      Me too Chris. Me too. And Avery and her parents are such a great example!

      Reply

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