Hello, this is my great nephew, Rylan Hubbard. He is 14 years old. Earlier this year, Rylan became very fatigued during the day, had little to no energy for activities or even family visits let alone school. His energy was very low and dropped to an alarming level. After taking Rylan to the local clinic and then subsequently being admitted to the ER, we found out that his blood count was very low. His family lives in Brookings, Oregon. They had to drive Rylan to Children's Hospital in Portland, which is about 6 hours away. Once in the hospital, it was discovered that Rylan was not able to produce his own blood. He then spent most of his summer at the Ronald McDonald House in Portland, going every few days for a blood transfusion. Still, with no understanding as to why his body can't produce his own blood, he was given the all-clear to go home and return for weekly appointments. The weekly appointments range from clinics for blood count to ensure good levels, or a transfusion of blood as needed, and to change out the dressing o his PICC line. Every 4th week is an infusion of antibiotics to keep his PICC line clean and any illness away .

In October, Rylan was diagnosed with TBD Telomere Biology Disorder. https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/telomere-biology-disorders#:~:text=Telomere%20biology%20disorders%2C%20also%20called%20telomeropathies%2C%20are%20a,%E2%80%94%20sometimes%20in%20people%20over%2060%20years%20old. With this diagnosis, the hospital was getting ready to do a bone marrow transplant. He would need chemotherapy after his transplant. They discovered when doing an EKG that his heart has a few anomalies. Before they can do the bone marrow transplant, they need to consult with a cardiologist to determine if his heart is healthy enough for the transplant. If it is not healthy enough, Rylan will need to go on a heart transplant list thus compounding his hospitalization and down time.

Mom has had to give up working to be able to get Rylan back and forth from the appointments and to be able to be there with him during and after his transplant which will be 4-6 weeks recovery in the hospital, an additional 100 days they need to stay in Portland at the Ronald McDonald House for treatment, and then maybe if everything goes well he can return home after.. The cost of fuel is very expensive, and it is currently costing over $800 a month in fuel. The family is looking at having to move to Portland to be close to the hospital as well as this may go into long term care. As you can tell, expenses are mounting, and we haven't even gotten to the long part of expenses from surgeries.

Some fun facts about Rylan: Rylan is the oldest of 3 kids at home. He has a brother, Talon, a sister, Sofia, and his oldest brother, Caleb. Mom and dad are Jacen and Heather Hubbard. They currently live in Brookings, Oregon, and they love living in their small coastal town of Brookings. Rylan loves to read, and his favorite is Harry Potter. He loves gaming and cats and has always wanted to be a veterinarian to help animals. We swear he is a cat whisperer. Honestly, he is very soft-spoken but seems to love everyone around him.

Please consider donating to help mom and dad not have to worry as much about the expenses as they work with the doctors and nurses to help Rylan get healthy again. To get back to being a kid again.