The Gadberry Family
Our Story
Hello, My name is Jacoby. I am 9 years old, and I have Chronic granulomatous disease (CGD, which is a genetic disorder in which white blood cells called phagocytes are unable to kill certain types of bacteria and fungi. Also, I was born completely blind in my right eye, and over the last 2 years, my left eye sight has deteriorated and now completely blind. I am learning braille and I use a cane and a Para-Educator at school for assistance.
I live in Springfield IL with my Mom and older brother. Due to many challenges I have faced and continue to face, this is leaving my single mom in financial hardship. My family and I prepared for my stem cell transplant to cure my CGD in November 2022. We made the decision to move forward with the transplant because we decided that this would be best. On March 23rd, 2023 I received my new cells!! YAYY!
Everything was going great until day +32 when I started getting bad headaches, not able to eat and my fever spiked to 100.4. My mom did as the doctors instructed, and called the on call team to meet me at the clinic right away. The doctors believe I am losing my donor cells and afraid we will have to receive another transplant. This will delay my mom (who's my only caregiver) from returning to work to take care of me and my brother. Our bills back home have been building up since my mom went on leave from her job on January 24th. She has been on unpaid leave since then and has been very stressful for our family and we really need Help.
My mom does her best to focus on my recovery but for many days she worries how we will pay our bills. We will continue to pray and have faith but if you can find it in your heart to help me and my family we will forever be grateful for you!
Family Updates
July 2nd, 2023
Back in the PICU! Jacoby had a vessel to burst in his large intestine he woke up to use the washroom and it was all blood. An emergency procedure was done to block that vessel. The procedure went well and he is resting he has to be NPO for 24 hrs just for security that the vessel isn't injured again. Continue to pray for us!
June 28th 2023
Hello all I wanted to update you all on Jacobys progress! We seem to be moving forward he has not been feeling the greatest most days lots of pain and swelling in his body. The team tried to ween him off some of the medication and his inflammation markers jumped up instantly. An emergency dose of steroids had to be given to calm his body back down. We are taking it one day at a time, things are still up in the air but we are continuing to pray and ask God to heal his body and not let the transplant reject again! Thank you for your support and keep us in your prayers!
May 30, 2023
The last couple days have been rocky from uncontrollable bleeding from his nose due to his platelets and counts being at 0, to pain all over his body, fevers, anxiety, and restlessness. Today we learned his broviac line(chest tube) is infected so a new line has to be placed tomorrow. He has had some good moments where we laughed and joked around but overall he has been sad. He has not been wanting to get out of bed, he fusses when its time to take his medication now all he wants to do is sleep , I am doing my best to keep him uplifted and in good spirits. Keep us in your prayers!