Mabry Kate and Owen, Krabbe Leukodystrophy – Duke University Hospital
To tell the story of sweet Owen, we must first start with the story of his sister, Mabry Kate. Mabry Kate was born seemingly happy and healthy on March 13, 2014. She was cooing, smiling, and interacting like most babies do until she was almost three months of age. From our initial feeling that something wasn’t quite right until her diagnosis three months later, Mabry Kate suffered some brutal symptoms that didn’t seem to fit together. She experienced things such as feeding difficulties, weight loss, muscle spasms, nerve pain, stiffness in her arms and legs, and much more. No one in our hometown could provide us with any answers.
Mabry Kate was diagnosed when we sought a second opinion. Within a few days of our visit, they called us with the most devastating news that would be any parent’s worst nightmare. Mabry Kate was diagnosed with Krabbe Leukodystrophy. We were told there was nothing we could do, and that she wouldn’t live beyond the age of 2. Even worse, we were told that if her disease had been diagnosed earlier, or had Krabbe been a part of Tennessee’s newborn screening panel, Mabry Kate could have received life-saving treatment through a stem cell transplant.
In the midst of our diagnostic quest for answers about Mabry Kate’s condition, we unexpectedly discovered we were pregnant again. Along with her diagnosis of Krabbe came our insight from the doctors that this was a genetic condition. We learned that any baby we ever conceive will have a 25% chance of inheriting Krabbe.
Long story short, three months to the day after getting Mabry’s diagnosis, our unborn baby was also diagnosed with Krabbe. We were devastated, but there was hope. Because of Mabry Kate, we knew to test this baby so that it may have a chance to receive the treatment Mabry was denied.
After nearly 11 months of battling this horrid disease, Mabry Kate received her heavenly healing, but she didn’t go without leaving her mark on the world in more ways than one. The impact she had within our community and beyond cannot be described without writing a book, but perhaps the most valuable impact she had was on that of her baby brother, Owen. Bringing awareness to this disease through her brave and selfless battle, she gave him a fighting chance against this disease.
Owen was born one month early on March 30, 2015 at Duke University Hospital, only one month and three weeks following Mabry Kate’s passing. He was born early as it is crucial that children affected by Krabbe receive their stem cell transplant before the onset of symptoms.
Under the care of Dr. Kurtzberg and her wonderful team, Owen underwent a series of tests to confirm diagnosis and to check if the disease had yet progressed. His doctors concluded that he was in a good place for treatment. Following the tests, Owen received high doses of chemotherapy followed by his transplant five days before his actual due date.
The following months were not easy, as Owen was facing some tough side effects resulting from chemotherapy. All the while, Owen was on the road to recovery. Every day he was discovering and doing new things instead of daily losing abilities.
In our 8 months living in Durham, NC, we never questioned the care in which Owen received while at Duke. The doctors, nurses, nurse practitioners, CNAs, therapists, social workers, and beyond worked together wonderfully and were nothing but great to our family, and most importantly Owen. They became family.
Unlike the hospital in our hometown, Owen’s care was coming from an expert in the world of Leukodystrophies. It was a breath of fresh air to have Dr. Kurtzberg caring for our child because not only had she heard of this disease (a rarity where we are from), but she knew what she was dealing with, how to treat it, and could tell us what to expect. In fact, she is the one who developed the treatment that Owen received. When seeking the best care, it doesn’t get much better than that.
We are so thankful and blessed that we chose Dr. Kurtzberg and her team at Duke University Hospital to provide Owen with his care. The difference in the life of Mabry Kate and Owen is like comparing night and day. While every day we wish Mabry Kate could have received the same treatment, we are so grateful for her and so proud of the fight she fought. We will never tell Owen’s story without telling hers. And we will never tell Owen’s story without mentioning the incredible team of medical professionals at Duke who all worked together to give Owen this chance. And we, of course, will never tell our story without giving every ounce of glory to God!
Owen is currently a very happy and healthy 2 ½ year old, exceeding all expectations, living life to the fullest, and defying all odds!