Javanti's Story
Javi was about 7 months old when he started showing symptoms it started with excessive crying I thought he was just teething really bad then he started getting rashes and high fevers. I would take him to the doctors or Emergency Room at least once a week since ibuprofen and Tyelnol were not working. Finally at 10 months old, the daycare refused to take him since he had a swollen thumb/palm and it was hot to the touch. Not only that but he would cry if you touched it, I took him to the ER on Dec 30th 2019 and they did an x-ray it came back normal and sent us on our way. I knew something was WRONG and after bloodwork and urine testing I got the dreaded phone call on Jan 2nd, 2020 "we need you to come into the office to discuss Javanti's bloodwork". When I got into the office they stated he might have Kawasaki disease and we need to be admitted to Omaha Childrens Hospital immediately. The doctors had no idea what was going on and sent us to the infectious diesease and the ICU team, they did blood work every 2 hours and his levels were way over the limits they should be. The cancer test came back negative! They ended up doing a blood transfusion to see if it would help, well it did and after a few days of follow labs we were able to go home. Unfortunately a few weeks later we were admitted back into the hospital and was officially diagnosed with Juvenile Idiopathic Systemic Arthritis we got the right treatment and went home with a plan on Jan 28th 2020!!! At the beginning it was alot of follow ups, bloodwork, and few days at BoysTown Hospital to do a high dose of steroid transfusion. Fast forward to today and he currently is taking four different medications and he is doing very well with this treatment plan. We are hoping to keep it this way and eventually only be on Methotreaxte!! He loves to be active and run around outside, riding his bike, and chasing his older sister, but during rainy days an cold days he will cry saying his legs hurt but over all he is the strongest little man I know!!
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SOPHIA'S STORY
Sophia was diagnosed with juvenile arthritis at the tender age of 7, and since then, her life has been profoundly impacted. The constant pain and inflammation caused by this condition affect her in every aspect, making even simple daily activities a struggle. However, due to her autism, Sophia faces an additional communication barrier when expressing the pitfalls of her arthritis.
Sophia's autism amplifies the complexity of her condition, as she finds it difficult to communicate her pain and discomfort verbally. As her mother, I have witnessed the frustration she experiences when she cannot express the severity of her arthritis-related symptoms. Despite these obstacles, Sophia has shown incredible resilience, determination, and an unwavering spirit. She has developed her own unique ways of coping with the pain, showcasing her strength and adaptability.
Education is an essential aspect of Sophia's life, and she strives to succeed academically. However, her conditions often present obstacles to her learning. With the help of her dedicated teachers and individualized education plans, Sophia has made remarkable progress. Despite the setbacks caused by her health challenges, she maintains a deep curiosity for learning.
WILLA'S STORY
We're just at the beginning of our JA journey with Willa, but feel very fortunate that all of her flair ups and symptoms have been mild up to this point. She had pain and swelling in one knee that we later did surgery on to drain and administer a steroid. She's currently taking Naproxen and Methotrexate. We're hoping it's an aggressive enough treatment to keep all her symptoms minimal and force JA into remission. Like I said, we're still very new to this but feel that with fast acting doctors and aggressive treatment we can pull out all the stops for Willa and she can experience a pain-free childhood.