This blog is dedicated to my two beautiful children who have so bravely fought a terminal illness known as Krabbe Disease. My first child, Mabry Kate, was born on March 13, 2014. She was seemingly happy and healthy, and we couldn’t have been more excited. She began to hit milestones as any other child would. The most cherished of these milestones for her father and I is her smile.
Just before three months of age, we noticed her smile disappear. This was followed by trouble with feeds and gaining weight, stiffness in her arms and legs, clinching of fists and muscle spasms.
For the next three and a half months we were in and out of the offices of every specialist under the sun. We were in and out of the hospital as well, one time for 17 days. She had surgery to place a feeding tube and to wrap her stomach around her esophagus (Nissen fundoplication) to hold her feeds down. She also had numerous tests done that weren’t providing us answers, including a muscle biopsy. This came back inconclusive after six long weeks of waiting.
On September 16, 2014, we sought a second opinion at Cincinnati Children’s Hospital. There we met with a team consisting of a neurologist, geneticist and a dietician who, based on her previous tests and symptoms, came up with a couple blood tests they wanted to run. We went home to wait for answers and were told not to google anything, and we didn’t.
On September 19, 2014, we received the devastating news that our sweet girl had Krabbe Disease for which there is no cure. There is treatment through a cord blood transplant if the child is pre symptomatic. Mabry Kate was too far progressed for any sort of treatment. We also learned that had this been screened for at birth in Tennessee, it would’ve been detected and treatment could have been arranged. Instead, she was given a two year life expectancy and we were told to make her comfortable and enjoy every day with her.
Now let’s back up to September 1, 2014. Just a couple weeks before finding out Mabry Kate’s grim diagnosis. On this day, we were shocked to discover, that despite our best efforts through birth control and other means, we were pregnant again. I was in complete disbelief. My husband and I had discussed having no more children, knowing that whatever Mabry Kate had would require extra care and attention. We never expected to lose her. To top it off, after discovering her diagnosis, we learned it was a genetic disease passed down to the child when two parents are carriers. This meant that the child we were now pregnant with had a 25% chance of inheriting the disease also.
In the meantime, I’m certain I had convinced myself that our son would not have this disease. On December 19, 2014, we found out otherwise. Owen Baxter did in fact inherit this awful disease. We were put in contact with Dr. Joanne Kurtzberg at Duke University Hospital. We arranged to give birth there as soon as his lungs were developed enough, and to start treatment for a cord blood transplant immediately after birth. The whole transplant process was projected to take anywhere from 6-8 months.
Despite this devastating news, we still lived day by day and made the most of our time with Mabry Kate. We had planned on celebrating her first birthday just before her brother’s birth in March, and to bring her with us to Duke for the long process. God had other plans.
On February 7, 2015, just before leaving to go on a father/daughter date to a Valentine’s Day dance, Mabry Kate suffered a severe apnic episode that she could not recover from. She passed away in the arms of her father and me. As you can imagine, it was the most terrifying and horrific day of our lives. We miss her daily and think of her constantly. She has forever made an imprint on our hearts and the hearts of many others. And she has saved her brother’s life.
Owen Baxter was born on March 30, 2015. They immediately did testing to confirm his diagnosis and to test the progression of the disease. He did have it, and the progression had not yet begun. That was a tiny bit of good news, because it isn’t a good idea to transplant patients already showing symptoms. He then began a very aggressive chemotherapy regime to wipe out his immune system and prepare his body to accept and not fight off the donor cells.
On April 22, 2015, Owen had his cord blood transplant. He engrafted on May 6th. This means that his body had begun to accept the new cells. Since that time, he has been fighting hard to overcome the setbacks that the chemotherapy caused. He has fought hard, and is showing great progress.
On July 17, 2015, after 110 days in the hospital, he was discharged. We are still living in Durham, NC and attending clinic. We started out going to clinic daily, and we now go on Tuesdays, Thursdays and Saturdays. These clinic visits will continue to dwindle down until we can finally go home to Tennessee. He will always have a yearly visit to Duke for the rest of his life.
Mabry Kate’s suffering can be credited to saving Owen’s life. Her life, along with that of Dylan May and Scarlett Measles (also Krabbe warriors in TN), can be credited to saving the lives of future babies in TN. As of August 6, 2015, the Mabry Kate Webb Act was approved by the state of Tennessee and the Tennessee Genetics Advisory Board. This act will add Krabbe along with 5 other similiar diseases, known as Leukodystrophies, to the newborn screening in Tennessee.
There is still work to be done to get everything in place, but we are on our way to saving lives! No child, nor their family, should suffer in the ways Mabry Kate and our family have experienced, especially if it can be prevented. The transplant is not known as a “cure” for the disease, because the disease will still be in Owen’s DNA, but in our eyes, it is.
We thank God for the life of Mabry Kate. We have been blessed beyond measure. Her life has given Owen life. Her life has given us new perspective, new trust, and new hope in God. We couldn’t imagine being the parents of any other children. We are so proud our angel, Mabry Kate and our warrior, Owen Baxter.
Thanks for reading our story! To learn more about Krabbe Disease or how you can get your newborn screened for this disease, please visit http://www.huntershope.org.