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Braylynn’s Story: Strength and Resilience in the Face of SevereNKH

  • 2 days ago
  • 2 min read

Our life with NKH has been crazy, to say the least. But it has also been incredibly rewarding. At just 4 days old, Braylynn stopped breathing in my arms. Without thinking, I got in the car and rushed to the nearest ER, where she was immediately intubated. All of the nurses and doctors in the ER rushed to her room, some working, some hovering, some running around to get what they needed.


A mother holds a newborn in a hospital. The baby, covered in wires and tubes, is wrapped in a pink blanket with text "BRAYLYNN RAE".
Braylynn in the NICU with mom Caitlin

She was eventually life-flighted to our local Children’s Hospital, where she stayed for a month. A long month of blood tests, life support, doctors coming in and out. Until eventually we received our answer, Non Ketotic Hyperglycinemia. Strength and Resilience in the Face of SevereNKH


Braylynn is now almost 3 years old, an age I never thought I would see with her. She has Severe NKH, takes medications 3 times a day, and has a food pump basically attached to her all hours of the day. But despite everything she’s been through, I still see so much love and so much courage and resilience from her. She is such a happy, sassy, and loving person. We have surrounded ourselves with amazing people, amazing friends who we now call family, and a loving community of other NKH families.

A collage of a young girl in various settings: cuddled on a couch, lying with an adult, holding a book and toy, and posing with family.
Photo collage of Braylynn!

We strive to create lasting memories with those we love each and every day, to give Braylynn a chance to experience everything the world has to offer. Living every day to the fullest. Soaking up the snuggles, the smiles, and the love. Because every day with Braylynn is a blessing.


As a medical parent, I’m always on high alert, always watching, listening.
Young girl in different settings: smiling indoors, stroller with adult, between two smiling adults, and resting in hospital gown. Joyful and affectionate.
Cutie collage of Braylynn!

Listening to her noises, avoiding sickness, watching for the sniffles, watching her seizures, watching her movements. Always waiting for something. Throughout her almost 3 years, we’ve dealt with daily seizures, 10 medications a day, over 24 hospital admissions, 3 intubations, and a handful of horrible respiratory illnesses. But despite all of that, Braylynn is still so strong. She shows up each and every day, ready to conquer what the day brings.

Child reads a colorful book with a cow and words. Another child in pajamas sits in a swing. A woman holds a child beside a dog. A man and two children relax on a couch.
Sweet Braylynn reading a book, hanging our in her seat, being held by her momma, and chilling on the couch!


She has shown her strength during therapies, playing with toys, making her own decisions, and reading stories. She’s shown me what true strength looks like, what true, real love looks like. She is my entire world, the most important person in my life and my reason for fighting and advocating.


—Caitlin Clark, Mom, Caregiver, Advocate




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