Healing Henley. An SDS Story told by Henley's mom, Jess

"Today I have an appreciation for the gift of life and the gift of trial, that I did not have prior to Henley. When I look back at the photos we took during the first two years of Henley's life, I sometimes can't believe that was our reality. "

Jess and daughter Henley (who suffers from Shwachman-Diamond Syndrome) in the hospital, preparing for bone marrow transplant, in 2018


Sharing her story in her own words from a recent FB post, with permission:


"Some of you have asked to read the article submission I made to Gritty Fatih Magazine for their May/June 2020 issue. Each issue of Gritty Faith has a theme, this issue was LIVING DESPITE THE BATTLE. I encourage you to check out The Norway Center Store online for more information about their mission.


Some of you may not have known me during this time and today, from the outside looking in, our lives appear very normal. Today I have an appreciation for the gift of life and the gift of trial, that I did not have prior to Henley. When I look back at the photos we took during the first two years of Henley's life, I sometimes can't believe that was our reality. Specifically, the battles with her skin. No one would ever believe this was the same child.


*As a side note, I continue to work on a book that will share more of the blessings and miracles we have encountered on this journey.

#healinghenley"

[...] Kyle and I began the “What if…” conversations. Looking back, these talks prepared us for the battle to come. We needed a plan to ensure we could still provide stability to our twins, care for our many horses and save Henley.

In May 2017, my husband Kyle and I, welcomed our third child, Henley.


Henley was born full term, yet smaller than anticipated. Only slightly larger than each of our twin daughters, who had been born a month premature.


She seemed to need more care than our twins did as infants. She cried more, wanted to eat constantly and her skin would become so pale when she slept that I often checked to make sure she was still breathing.


In my heart, I felt like something was wrong. Her pediatrician was concerned she wasn’t gaining weight and recommended we try feeding her formula or fortified breast milk instead of continuing breastfeeding. But Henley absolutely refused to drink from a bottle.

At six weeks old, I finally felt heard when a new pediatrician, two hours from our home, agreed something was wrong with Henley and admitted her to the hospital.

Within hours a Pediatric Oncologist was trying to tell me Henley may have leukemia or bone marrow failure. Her little body wasn’t making the red and white blood cells she needed to live.


It was then that Kyle and I began the “What if…” conversations. Looking back, these talks prepared us for the battle to come. We needed a plan to ensure we could still provide stability to our twins, care for our many horses and save Henley.

Utilizing this method of self preservation and calling for prayer from family and friends gave me strength. It helped me breath.


I couldn’t be weighed down by anger, resentment or constant sadness over the battle we had been chosen for. Our cross was heavy enough. Instead, I felt driven to attach myself more than ever to God and called out to Him to help us. I began writing and sharing that testimony with others through a care page on Facebook we started called, Healing Henley.

After nearly a week in the hospital and Henley’s condition deteriorating, a decision was made to fly her by air ambulance to the University of Minnesota Masonic Children’s Hospital.

This first trip away from home with Henley lasted 45 days. During those 45 days, I saw our twins, who weren’t yet two years old, for less than 24 hours. It was painful and exhausting.

We returned home with a diagnosis that changed our lives, but that didn’t mean we had to stop living. It just meant our life would be different than the way we had envisioned it. God had a plan for us. This battle would be a blessing.


Henley was diagnosed with a rare type of bone marrow failure called Shwachman Diamond Syndrome. Our lives became filled with blood transfusions, daily medications, including injections we gave her, multiple trips to Minneapolis for doctor visits, hospital admissions and a life of isolation for our family. It was not just her bone marrow that was affected, her liver and pancreas did not function normally and her skeletal system showed deformities too.

We sold most of our horses and used the money to purchase a vehicle that was more practical for frequent long trips. Driving a ranchy, one ton, crew cab, long box pick up to Minneapolis, sometimes multiple times a month, was not practical.


Our twins didn’t participate in play dates or preschool. We didn’t attend church. We didn’t join our extended family to celebrate holidays or birthdays. Henley was just too fragile.

As the months went on, Henley’s body began to fail even more. Our path to saving our daughter’s life was becoming clear, she needed a bone marrow transplant.


We would kill her existing bone marrow, expect her to live through that and pray new cells, donated by a young man in Germany, would grow in her body and give her and our family a new life.


In April 2018 our family of five temporarily moved from the peaceful solitude of our little ranch in western North Dakota to the congested, concrete jungle of Minneapolis. We anticipated a minimum of four months there.


Living the best life we could live in our complicated circumstances and keeping Henley healthy were our biggest priorities. We thought about things that would make our lives easier during a time that would feel impossible.


My husband took leave from work. We rented an apartment one mile from the hospital. It would be home for Kyle and the twins while I lived in the hospital with Henley. We hired a nanny to care daily for the twins so Kyle could help Henley and I as much as possible through the anticipated complications of chemotherapy and transplant.


One day in Minneapolis, before Henley was admitted our family took a walk across the street from our apartment building. Kyle and I, Henley in her stroller, the twins running ahead of us on the walking path. It felt so normal. I stood still and took a picture. I wanted to freeze that moment in time and not face reality.


The next day, Henley developed a fever and blood infection. She was admitted to the hospital a week earlier than planned. I yearned for the family walks I imagined us having and worried this life threatening blood infection would steal her from us forever.


That night, after she was admitted, as we settled into our hospital room, I watched as Henley lay in her crib. She was smiling ear to ear and waving at someone or something I couldn’t see.


It was the reminder I needed that we were not alone. Angels were standing by to guide us through this battle.


Chemotherapy lasted 14 days. And after nearly three weeks in the hospital, she received her new bone marrow.


After transplant though, we began to fight a new and mysterious battle of complications that stumped her doctors. Her skin began to swell, welt and peel off her body. Everywhere. Everyday was worse than the day before and no one could tell us why.


After 60 days in the hospital, she was stable enough to return to our apartment a mile away. This lasted a very short time and she was readmitted three times.


Her skin was so bad that we couldn’t keep her central line properly bandaged and in place, a critical piece to her post transplant care. She would itch and claw at her skin constantly. Ripping and tearing it off her body until she would bleed. She spent months sleeping in our arms because she couldn’t be settled any other way.


Through all the frustrations we would try to celebrate each day, because surely, it had to get better.


After four and a half months we returned home to western North Dakota. Henley’s marrow was now doing the job it was supposed to do, growing blood cells. But had we traded that for a lifelong battle of skin care with a child that now looked like a severe burn victim?

Although I was happy to be home, it was during this time that I finally began to feel the effects of not sleeping for more than two hours at a time, for nearly 16 months. My body and mind were nearly broken, but we battled on.


The key to our survival through this battle was our faith and identifying and celebrating the smallest of joys each day. Some days that was a fancy cup of coffee from across the street, some days it was 20 minutes on the playground with my twins and other days it was just five minutes in the sun, breathing something other than hospital air.


When all of Henley’s post transplant medications finally ended in December 2018, we finally began to see improvements in her skin.


Now, nearly two years post transplant it is absolutely a miracle to watch her. No one would ever know the battle Henley has fought by just looking at her. Our journey would not have been possible without the love and support we received from friends and family and especially God.


I have often wished I could articulate why I was drawn closer to God through this battle and why others push him away when they are faced with a struggle. The only answer I can conclude, is that I refused to let our pain define our lives. I needed it to mean something and teach us something and I will always choose to give praise for our battle, for the lessons and for the life we have today.







Shwachman-Diamond Syndrome Alliance

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