Parent’s Make Sure Child Experiences the World Before Krabbe Disease Takes Hold

By Amber McNamara and Tyson Williams
Autumn Rose Williams was born August 3rd, 2016 with much anticipation. She was a perfect baby in every way. She is the youngest of two very large families and it was apparent that she was quite a special girl. She had such focus when she would look into your eyes when you talked to her, even at just one week old. Her laugh was contagious.

Autumn always seemed to be more fussy than other babies. On the evening of January 15th, 2017 she was crying nearly non-stop and had a little twitch in her arms. So we brought her to the emergency room in Santa Rosa. From there she was taken by ambulance to a hospital in San Francisco and admitted there for over a week. During that time, in the pediatric ICU, she had even more signs of a neural condition and even seizures. After a barrage of medicine and tests including an MRI and two spinal taps, she was released with no diagnosis. This was just the beginning of our nightmare.

Nearly a week later, at her follow up visit in San Francisco, we were told they were making arrangements to have her admitted at the Lucile Packard Pediatric Hospital at Stanford University and to go there immediately. It seemed everybody knew of her before we even arrived. We were at Stanford for five days. They took great care of Autumn without medicating to the point of incoherence. Shortly before we were discharged on January 31st, we were asked to join a doctor’s conference on the second floor. Every doctor that visited her during this stay was present. We learned that their collective findings indicated that Autumn has Krabbe Disease, a terminal condition with no treatment or cure.

Since her diagnosis, Autumn’s family have been giving her all the comfort and care they possibly could. Before she loses her vision, which is coming, Autumn is experiencing every beautiful sight possible and her house is decorated like a child’s birthday party. Before she loses her hearing she gets to listen to music day and night and dances with her parents. While she can still eat without a feeding tube, her taste buds also get to experience many great things. Not every day can be as good as the one before for her so everyday that she can see and hear the people around her is a good one.

Thank you for supporting Autumn Rose and the other Race for Kids Heroes.

You can read about all the Race for Kids Heroes Stories at www.RaceForKids.org.