Harper Jo is a beautiful little girl with a beautiful voice that hums, and snorts, and sings, and coos/caws. Her giggle is contagious, and her smile lights up a room. She loves tickles and a good cuddle session. Chewing is her favorite pastime & swimming a close second! She has started school and really loves it! She says goofy things with her talker and keeps us on our toes. She is learning how to move around on her own in her own way — that is pretty on point for who she is! Harper’s way is the only way! She loves food now, and is willing to try anything, but her favorite is yogurt! She has the BEST hair and eyebrows! We try not to put too many expectations on her and just let her grow and change in her own time. She has come SO FAR from when she was first diagnosed and we can’t wait to see what she shows us next!

Harper Joanne was born three weeks premature in December 2022. The only early complication was that she failed her newborn hearing screener and three follow-ups. She also struggled to gain weight, and at 21 days old we were sent to the hospital for overnight observation. On arrival, Harper’s temperature was 90.2°F — hypothermic. The hospital called a CODE for failure to thrive and we were admitted to the PICU. Her major organs were shutting down.
The team ran every test they could think of. Results were inconclusive. Her platelets dropped low enough to require transfusions. Because her low tone meant she aspirated when she swallowed, she couldn’t feed safely — an NG tube went in through her nose, and stayed for six months until she got her G-tube. Harper was hospitalized for three weeks. During that admission, genetic testing came back: at four weeks old, Harper was diagnosed with TFE3. At the time, she was one of 19 cases in the world, and the only one in Illinois.
This began our journey, and it was a dark one. We came home with oxygen, a PulseOx, and a feeding pump. Soon after, we learned her liver had been damaged by the period of malnutrition, along with her kidneys. Multiple liver biopsies and HIDA scans followed. Our local children’s hospital sent us to Ann & Robert H. Lurie Children’s Hospital of Chicago for another biopsy and admission to the Liver Floor. Harper’s scans pointed to Biliary Atresia — a rare, potentially fatal condition requiring surgery before seven weeks of age. She was in her sixth week. We were running out of time.
After the Lurie biopsy, the team came into our room with news no one expected. Every marker from her earlier HIDA scan and biopsy was gone. Her body was secreting bile on its own. The doctors were as stunned as we were. I knew in my heart what had happened. She is our miracle.
Life settled medically after that, and the work of building Harper’s care team began. We enrolled in Illinois Early Intervention (0-3) for PT, OT, DT, and feeding-focused Speech. The G-tube was, literally, life-saving — one of the best decisions we ever made.
Harper has bilateral hearing loss and currently wears two hearing aids. She will receive a cochlear implant on her left side at the end of spring, and we expect it to change her world the way the G-tube did. Because of limited gross and fine motor skills, she communicates using a Tobii Dynavox eye-gaze device — and last year, she used it to say “Mom,” “Dad,” and “I love you” for the first time.
She is now in a therapeutic preschool that adores her, with PT, OT, Speech, Hearing, AT, and Social Work every week. She is thriving there.
Harper has fought hard for every inch of where she is. So have we. This isn’t the life I would have chosen for her — no parent would choose this for their child — but she has changed me for the better, and she is the light of our life. She has a personality that fills a room and a laugh that can bring you to tears. She loves everyone she meets. She is a world-class cuddler. Her life is going to be full of love, and we are grateful beyond words for everyone walking it with us.
This diagnosis is isolating. We face things most parents will never have to imagine. If you are a family newly inside it, you are not alone.