Hagerty

The Hagerty Family lives in Roseburg. Jennifer and Justin are parents of two boys, 12 year old Joshua and 11 year old Jaxon. While the boys each have their own challenges, the family just finds a way for them to live their best life. They have been involved with FEATT for about 7 years and Jennifer says this community means so much to her, not just what she has learned but how she can give back too. She likes to encourage other families as well.

When Joshua was born, he was missing 80% of his skin, had a clef palate, as well as kidney and heart problems. He also never developed any sweat glands. He was medically fragile since infancy and has had over 40 surgeries throughout his life. That doesn't stop him from being social, playing soccer or enjoying the outdoors. Mom's resilience and can-do attitude is all about making it work so he can enjoy any activity he wants to. They make sure he has his cooling vest, spray water and gets extra cooling breaks. Josh does great in school, has a lot of connections in the community and is well accepted by his peers. He also has a great sense of humor, when asked about his limitations, Josh says "I don't have sweat glands, but I don't sweat it!"

On the other hand, brother, Jaxon was born looking "perfect" and healthy. He hit developmental milestones until at 15 months, while the vaccination needle was still in his arm, he had a grand mal seizure. After that he was not able to walk or talk. All of his baby babble disappeared. Jennifer says it was like his brain reset to infancy, but his body was that of a 15 month old. He has had difficulty swallowing and with his coordination. Since they were already connected with Early Intervention, they were able to get into a child development specialist and do genetic testing. They ruled out Fragile X but found another chromosome deletion. They also discovered he has chimeric mosaisism, which means he has two different sets of genes throughout different organs in his body. All of this created a perfect storm for his immune system to have a severe reaction to the ingredients in the vaccines.

The boys were both born in California and then the family moved up to Oregon. Jaxon had a lot of educational support in California, but the services are different in Oregon and he had to wait until 5 to have full day school, which set back his progress. At school his teachers noticed he would go through a spell where he would stare blankly, then after he would rage and be violent. After brain scans and other testing they discovered he was having focal seizures. With the right medication they have been able to reduce his seizures.

When he was diagnosed, doctors said that Jaxon would never speak or be potty trained. Jennifer likes to share that he has surpassed all prognoses and expectations. She said that seeing other families achieve success in areas they thought they would never see was very encouraging to her. Now she wants to be that encouragement to others.

When asked how she stays so positive, Jennifer says that she has learned that when we let go of our own ideas about who or what our children will become, we can start seeing them for who they are. We love them for their abilities and celebrate their achievements. She is happy to share that Jaxon has made a lot of progress this last year with his communication skills. He is writing cursive, learning math and exceeding all of the barriers that the doctors created for him.

Jaxon has a great character and personality. He is able to find ways to connect with people in his own way. He uses scripts appropriately to make himself understood. He always has a smile on his face. Both boys find joy even when they aren't feeling 100 percent. Even when Joshua is stuck in the house because of a heat wave, he has a positive attitude. The boys enjoy their quality of life and don't feel like their diagnosis hinders them in any way.

The family loves the outdoors. They go hiking, bowling, out to the splash pads, and the indoor jump centers in Eugene. They love local parks and having picnics. They were so excited to be chosen for one of the FEATT Yurts at the coast. The boys have been asking to go camping for a while so this is a big deal for them! With help from the FEATT community, they have made friends and connections with people who understand what they are going through. They want everyone in the FEATT community to remember that we are here for each other and to remember to reach out when you need help, chances are someone else has gone through something similar and can relate.