Age 14, 9th Grade – Rancho Palos Verdes, CA
We welcome Rylan to the Junior Ambassador Team! We look forward to connecting Rylan and his family to our community and appreciate that they are sharing his story to help raise awareness.
Rylan’s mom, Kari, writes:
“Rylan was diagnosed with Benign Neutropenia at birth and we were told he would grow out of it by age 5. He was treated like any other kid when he had fevers and infections. He had fevers and illnesses about 90% of the time. He also had multiple hospital stays until he was 3 years old, and then at 3 years old, he got RSV and developed severe pneumonia including a pleurel effusion and was placed in the PICU for 3.5 weeks. After that horrendous hospital stay, he was prescribed the Vest Machine along with Nebulizers 3x’s a day. We think the continuous infections, and not being diagnosed with the correct kind of Neutropenia – and therefore not being treated with a fever protocol, etc – lead to his numerous infections worsening his lungs and Rylan ultimately developed Bronchiectasis in both lungs. Rylan’s infections and fever continued and at 8 years old, he was referred to a new Hematologist who suspected his Neutropenia was never Benign, but rather Severe Congenital Neutropenia. Genetic Testing was ordered, and came back that Rylan had a mutation of the Elane gene. He was immediately put on Neupogen and was able to stay well enough to go to school for the first time at 9 years old. We have been working hard to try to keep Rylan’s lungs from worsening. His lung function is at 67% currently. The SCN diagnosis, had it been detected earlier, could have possibly saved his lungs, however, we are here now and trying to do everything we can to keep him healthy and keep his lungs from worsening. We have moved from the city to the ocean where the air is cleaner, Rylan has gone through many different medications to try to find the best treatments, undergone many many procedures, and has been dedicated to airway clearance multiple times a day as well his Neupogen shots 3x’s a week. For us, Neutropenia and Bronchiectasis are hand in hand because one caused the other. That’s our story and it’s far from over.”
Thank you Rylan for joining our Junior Ambassador team and thank you Kari for sharing his story.
