Ambassador Program


The KAIGAN Foundation has established a "KAIGAN AMBASSADOR PROGRAM".

PLEASE WELCOME OUR KAIGAN FEST 2021 "KAIGAN AMBASSADOR-KAPTAIN KAIGAN BENJAMIN REED". Bridget (Ben's mother) shares their story........

Ben is a funny, kind, compassionate guy who loves animals and gaming. He is entering 9th grade and will be 14 this month! Ben isn't new to hospital stays or having medical issues, but this one takes the cake. Our world was rocked when he was diagnosed with Henoch-Schonlein Purpura (IGA Vasculitis) in November 2019. It started out with spots on his legs that looked like bug bites, then over the course of a few days his entire lower body was covered and he began having pain and swelling in his joints. Later that week he started getting stomach pain and couldn't eat or sleep. We were told that this disease would likely be self limiting, and it just had to run its course, but that wasn't the case with Ben. As his Pediatrician said "There is always an exception, and Ben tends to be the exception". The next day were in the ER because he was vomiting blood and having terrible stomach pain. He was taken from the local ER via ambulance to Janet Weis, where they suspected he had Intussusception (twisting of the bowels).

He was seen by several pediatric specialists during his week stay, including nephrology and gastroenterology. They were finally able to manage his pain, so he was sent home on a cocktail of medication. After a two-hour ride home, his vasculitis really kicked in, and the spots on his ankles began getting larger and opening. His feet and ankles were so swollen fluid began weeping out like tree sap. He was in excruciating pain and he didn't sleep for 36 hours. Nothing we did helped, we were constantly on the phone with his team of doctors, begging for help because we couldn't make the pain stop, and he was exhausted. They finally prescribed an oral steroid and within a few hours he started getting relief.

He started doing homebound learning through his local school district once we got the pain and swelling under control. But the stomach pain came back and he had daily constant stomach pain for about 6 weeks. Things finally seemed to calm down some around Christmas, but then his kidneys decided it was their turn. IGA Vasculitis can affect other organs, but most commonly affected are the stomach and kidneys. The doctors continued to monitor him and eventually it led to a Nephrology referral because he was spilling high amounts of protein and blood. Right before his nephrology consult in February, he caught both influenza and strep within a 10 day period. He had returned to school, and the germs just jumped at the chance. His urine went from normal, to black as espresso, then a light pink - all within a few hours. We knew then that his kidneys were in trouble.

We finally got to see the doctors from Geisinger Pediatric Nephrology, and they came up with a plan. They started daily steroids to try to slow things down and they did some testing to rule out other issues, since IGA Vasculitis can only really be diagnosed with a skin sample from one of the lesions or a kidney biopsy. In April 2020, he had a kidney biopsy and they were able to confirm his diagnosis. It also revealed that his kidneys had roughly 10% permanent damage to the glomeruli (the filters in your kidneys that filter blood), and he was diagnosed with glomerulonephritis and IGA Nephropathy.

They admitted him for three days for IV pulse therapy with high dose steroids. Ben had the typical side effects from the steroids, which was hard on him. Luckily he was able to stop taking steroids a year ago. He was put on a blood pressure medication and mycophenolate (an immunosuppressant). He has been on this medication for over a year now, and we are finally seeing improvement to the point that he is starting to wean from the immunosuppressant. We are so lucky to have a team of doctors who knew what to look for and how to treat him.

Ben rarely complains about what he is going through or things he needs to do in order to stay healthy. His siblings also gave up a lot in the last year to keep him safe and healthy, which I know he appreciates. We have had ups and downs, and we all missed a lot during the last 19 months of managing his illness, but we knew Ben needed us to keep him on the path to healing. He is so worth it! All three of our kids are looking forward to going back to in person learning in a few weeks and we are hopeful that things will continue to look up for Ben.