I Will Survive

My name is Tricia Junker and I am writing on behalf of my 8 month old niece, Jadyn Kietzer. The love story below is a testament for the song, “I Will Survive.”

Jadyn Marie Kietzer was born on June 24, 2009 to my sister Sara and her husband Lucas Kietzer in Mankato, MN. At birth, Jadyn’s right leg and right side of her face were swollen. An x-ray was taken almost immediately to determine the cause of the inflammation. Unfortunately, the x-ray showed nothing unusual and offered no definitive explanation for the swelling. The pediatrician sent her to Children’s Hospital in St. Paul, MN 2 days later.

The doctors at Children’s Hospital performed several tests and confirmed that Jadyn has lymphedema in her right leg and foot, both labia, and the right side of her face and neck, laryngomalacia, reflux, an enlarged tongue, 3 small fatty tumors, an anomaly on her right pupil, 2 hemangiomas on her scalp, anemia, and suffers from episodes of vomiting blood. Due to the many symptoms Jadyn exhibited, the Mayo Clinic in Rochester, MN was recommended as the next step in her medical journey.

To date, Jadyn has had countless procedures at the Mayo Clinic including ECG’s, CAT scans, MRI’s, tongue and GI biopsies. The doctors’ do not have a definitive diagnosis for Jadyn’s condition(s). The top 2 possible diseases/syndromes are Milroy’s Disease and Hennekam Syndrome, both of which are extremely rare.

I can only provide a brief description of what Jadyn and her family have been through. Jadyn’s Caring Bridge site is http://www.caringbridge.org/visit/jadynkietzer. Our family and friends are currently organizing a benefit and silent auction to help with the Kietzers’ mounting medical and household expenses.

We are at our wit’s end and need help but don’t know where else to turn to for this help. We love our Jadyn, pray that God will put His healing hand upon her and that God will give the doctor’s the curiosity and tenacity to see Jadyn through her journey.

A Note from Ann: This story of Jadyn's struggle, with what may be primary lymphedema, appears exactly as her loving aunt Tricia wrote it. The photographs are not of Jadyn.

 Good news! It is nice to have good news to share and here is an update on Jadyn from her aunt, "Jadyn is crawling, patty-caking, standing up in her crib, and becoming quite the little character!!!!! "

Got a question or comment? Post in the 'Living with Primary Lymphedema' forum. Share your stories in My Stories.
Category: Interviews