Rylan’s Journey
Rylan Jon Hyder came into this world on December 22, 2010.
Rylan was born a healthy baby boy in Knoxville, TN. While at the hospital, they noted one slight problem. He failed every hearing test he was given. Before his first birthday, he had his first of three sets of tubes placed due to multiple ear infections. The ENT also discovered severe obstructive sleep apnea and removed his tonsils and adenoids. However, for the most part Rylan had a normal first year of life.
In June of 2014, Rylan had abnormal GI issues for 2 weeks straight. After a visit to the pediatrician, lab tests revealed elevated liver enzymes and he was referred to a GI office in Knoxville, TN. His parents were told to keep a food diary and were referred to an allergist for further testing. The tests from the allergist returned with multiple allergies. They were then advised to change his diet, however, his symptoms still continued.
From July through August 2014, Rylan was referred to Vanderbilt GI and admitted to the hospital for a bowel blockage. He was discharged in August with a clear abdominal X-ray.
A referral was then given to Tristar Centennial to see a GI specialist. When Rylan’s records were reviewed by the provider at Tristar Centennial, it was noted he had flat femoral head bones and an enlarged liver and spleen. With that information, a referral was given to a Genetic Specialist.
On the first visit to the Genetic Specialist, urine and blood specimens were taken. With the previous information, the provider was given one of three diagnoses suspected. The Specialist was very open and honest without going into specific detail. During the second visit, more urine and blood were taken for more extensive testing. At the third follow up visit (DIAGNOSIS DAY) November 21, 2014, all results were reviewed and diagnosis was given as Mucopolysaccharidosis type IIIA. Diagnosis Day is a day that will be burned in our brains forever.
Finding out the devastating news was an extremely traumatic experience that no parent could ever foresee being a part of their future. After the diagnosis was given more questions came than there were answers. Regardless of the diagnosis, Rylan had to be saved. How could this happen to him? The prospect of medication therapy and clinical trials were minimal to non-existent at that time.
After a lot of research it started to make sense. Sanfilippo Syndrome had been the cause of everything this whole time. From birth, he never passed a hearing test. At 3 years old he had uncontrollable GI issues, anger outbursts, uncontrollable behavior in school, difficulty with memory, and did not understand simple concepts. In 2015, Rylan was given a make a wish trip to Disney World in Orlando, FL and was able to experience the Give Kids the World complex. The family continued to travel as much as possible with Rylan in the years to follow and make as many sweet memories as they could. The annual Saving Rylan Golf was established in 2016, and has been an ongoing fundraiser since. The family has also hosted a 5K at Cumberland Mountain State Park, events at Christmas time, and several others over the years. Rylan was only able to attend school from 2014-2018. With constant, irregular sleep patterns and declining health issues the family decided it was in his best interest for him to remain at home. In 2019 Rylan started having difficulty with thin liquids. In February 2020, a G-tube was placed to aid in nutritional supplementation. Shortly after, Hospice care was implemented to help his family with his care.
At this time most of Rylan’s days are spent at home with his family and friends. However, he still enjoys short trips to town with his dad and trips with his mom to pick up Brayden. Rylan still battles with severe feeding and GI issues daily and he has a hard time maintaining his weight. Most days are hard for Rylan and his family, but some days they get to see a sweet smile or hear a good laugh. His parents are doing a great job of giving him the best care possible.