Ryelyn is two years old and one of five children. Ryelyn’s family found out she possibly had TSC at a doctor’s visit while her mother was pregnant. She is a twin, so there were a lot of visits. At that particular visit, they found that she had rhabdomyomas on her heart and opted to wait on further testing until birth due to there being another baby involved. Ryelyn and her brother were born at 32 weeks and went straight to the NICU. She was the first baby in their local NICU to have TSC. The doctors worked hard to learn more about the disease. They did many scans, and after the MRI, they confirmed tubers. They later did a full genetic test and found out that Ryelyn had a confirmed diagnosis of TSC 2.
“At first, we saw different specialists at different times. We didn’t know that TSC Centers of Excellence existed, but once we found out, we started using the Center of Excellence at Le Bonheur in Memphis, Tennessee. They have been a blessing!”
“Ryelyn started having infantile spasms at five months old, three months adjusted. We went back to Le Bonheur where they started her on Sabril. Now we go twice a year, sometimes more. In August of 2022, we had to be med-flighted to Le Bonheur because she was seizing uncontrollably. We spent eight days in the epilepsy monitoring unit. Since then, we have been on multiple medications for different seizures, and we still do not have full seizure control. She is currently not a candidate for surgery due to her seizures being so widespread. In the past year, we have also started Everolimus for her kidneys. Her heart still has rhabdomyomas, but they are not causing any problems. We are thankful for our care team!”
“Ryelyn has four siblings, one being her twin, so our life can be chaotic! But our whole family loves her and accommodates anything she may need!”
“What gives us hope is seeing Ryelyn reach milestones that are not guaranteed she will meet! She goes to OT, PT and speech therapy twice a week. We have seen such improvements since starting!”
