Good afternoon, My name is Andrew, and this is my wife Rosie Dahlberg. You probably noticed Hole #8 “Forever 8” in memory of our daughter Brianna. We, alongside many in our community sponsored the hole to keep Brianna’s memory alive and celebrate her second heavenly birthday. Brianna Dahlberg was diagnosed with SJIA in 2016 just 18 months after she was born. One of the reasons SJIA is so hard on families is because the way to diagnose it is by eliminating all the other possibilities. It took many doctors, many hospitals and many months to diagnose her. In 2019 her disorder had progressed to include two separate rare lungs diseases . We were devastated and reached out to this small community of parents dealing with these same issues. They advised us to travel to Cincinnati OH for the SJIA Conference and that is where we met Samantha and GP. GP and Brianna were two peas in a pod right from the start. Being only a week apart in age, it was great for them to meet other kids facing the same challenges.
SJIA is such a challenge for a myriad of reasons. First and foremost, the disorder is RARE! The associated complications strike all different parts of the body, liver, kidneys, joints, and lungs to name a few. The Doctors treating and diagnosing these children many times will have not ever treated a child with the symptoms they’re seeing. SJIA families have to deal with so much medical trauma. Doctor’s appointments, Hospital stays, poke after poke after poke. Bill after bill after bill. Many of the drugs used to treat the disorder are experimental because there are not enough test cases to get FDA approval.
I am excited for GP Bosse 4 Foundation to be successful. Education and first hand knowledge of the difficulties families face is the best way to support those children and families that are suffering. Samantha and GP’s experience and expertise will prove just as valuable as the dollars they are raising to spread information and awareness to where it is desperately needed. Thank you again for coming out and supporting this great cause that is so near and dear to my heart! A big thank you to our Friend Samantha for organizing this all and inviting us to come down to Florida. We really appreciate this opportunity to speak with you about our experience with SJIA.