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

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

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.

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 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.

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

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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.

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