Chris was finally home to meet his son when he was almost 6 months old. We were then expecting our second baby Katelynn. She was born 10/31/08 and was only 15 months after having our first Wyatt. 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 did start showing signs of something going on when she was about 6 months old. She was having this 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 was crying 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 with labs. She was then diagnosed in September 2010 with Metachromatic Leukodystrophy.
Katelynn quickly lost all of her skills, was wheelchair and feeding tube dependent within weeks of the first noticeable signs to doctors. I learned how to care for her quickly became her advocate for care. Doctors had written her off as terminal and seemed to not care. Through some circumstances we ended up with a blessing disguise and were sent to the naval hospital where Katelynn became a name and a child not a number and a burden. We got some of the comfort care needed for her. We also were given the tools to help Chris in his military service, also Wyatt and his needs as still being a young child watching the loss of his sister happen right before his eyes. We continued all of Katelynn’s care at home for 4yrs of this disease.
In 2013 we became pregnant with our youngest Avalynn. At 10 weeks gestation we went to Duke to have a CVS test to check on the status of her having MLD and get her treatment if needed. She was found to only be a carrier. Avalynn was born 6/7/14 and 4 weeks later we lost Katelynn to MLD. We moved to Sallisaw, OK in August of 2016 when Chris was medically retired from the Marine Corps. To be near his family. We have fostered a few kids with medical needs since then. Wyatt is now 15 a sophomore in high school and Avalynn 8 and in the 2nd grade. Everyday is still a struggle to deal with the loss of our Katelynn. It is a a sharp pain from all we saw, miss etc for Chris, Wyatt and I and a pain of never really knowing her sister for Avalynn. She struggles with the learning of her through us and what she missed not having a sister around.