Abner Family

Katelynn was born a healthy baby girl. She hit all her milestones on time or early. She was speaking early and had a high level of cognitive skills. She began showing signs of something going on when she was about 6 months old. She developed a tremor when she was tired or just waking up. Doctors didn’t feel it was an issue and explained it away. She then started having some issues walking and was placed in physical therapy. She then started showing irritability and was crying for hours at night. She then had neurological symptoms such as dilated pupils, foot turning outwards, etc. She was finally seen by a neurologist and had an MRI followed by labs. She was finally diagnosed with Metachromatic Leukodystrophy in September of 2010. Katelynn quickly lost all of her skills. She was wheelchair and feeding tube-dependent within weeks of the first noticeable signs to doctors. Kristal learned how to care for her and quickly became her advocate for care. Doctors had written her off as terminal and seemed to not care. Through some unforeseen circumstances, we ended up with a blessing in disguise and were sent to the naval hospital where Katelynn became a name and a child, not a number and a burden. There we received some of the comfort care needed for her. We also were given the tools to help Chris in his military service as well as those that helped Wyatt process the trauma of watching the loss of his sister happen right before his eyes. The Abners continued all of Katelynn’s care at home for the four years Katelynn fought this disease.

In 2013, The Abners became pregnant with their youngest, Avalynn. At 10 weeks gestation, they traveled to Duke to have a CVS test to screen for MLD and to get her treatment if needed. She was found to only be a carrier. Avalynn was born June 7, 2014, and only four weeks later, they tragically lost Katelynn to MLD.

In August of 2016, The Abners moved to Sallisaw, Oklahoma after Chris medically retired from the Marine Corps to be near his family. Since then, the Abners have opened their home to foster medically fragile children. Wyatt is now 16 and a Junior in high school and Avalynn 9 and in the 3rd grade.

Every day is still a struggle to deal with the loss of our Katelynn. It is a sharp pain from all we saw and all that we are missing. For Avalynn it’s a different struggle…she struggles with learning of her through us and all she missed not having a sister around. Not a day goes by that she is not remembered. The thought of her brings both joy and pain. Joy for the beauty, grace, and strength she showed and shared with us. Pain that I have to continue my days without her and that so many other people missed out on meeting her. Pain and joy tethered together in trying to keep her memory alive. It still amazes me that joy and pain can walk hand in hand. I have joy knowing that she is healed in heaven and pain that she isn’t here in my arms.

~Kristal Abner