Support Mason's fight for life

Hi, I'm Mason, and I have a story to tell. I was born with a rare genetic disease called Chronic Granumatouses Disease and I'm Autistic. Chronic Gramumatouses Disease is a Primary Immune Deficiency Disease. I was just diagnosed with CGD in May of 2023. Only 20 kids a year are born with it, most don't survive to the age of 10 without being diagnosed and treated. With that being said I just turned 17 at the beginning of August, I didn't start treatment until May of this year because no one knew what was wrong with me. My neutrophils (we all have them) that fight bacteria and fungi to keep me from getting sick work at less than 1%, most peoples work at 89-90%.

On April 26, 2023, I was readmitted to Roanoke Memorial Hospital with a fever, abdominal pain, vomiting, and a very high heart rate. I had only been home from my last stay about 2 weeks from a neck infection that was pressing on the artery in my neck. This time I had several liver abscesses. Something was wrong no 16-year-old has these kinds of abscesses for no known reason. The doctors were perplexed, they couldn't find a reason. The doctors at RMH tried. I know they wanted to know as much as we did. Mom and Dad said, "I don't know what is causing this, is not going to work." My Mom said to transfer me to Duke. Mom and Dad would not back down, so calls were made and Dr. Patel entered our life.

Dr. Patel said I was stable enough to go home for Memorial Weekend if I took the IV antibiotics and rested. Dr. Patel told Mom and Dad to pack our bags because we would be at Duke for at least a week. I was admitted on that Tuesday. Dr. Patel said I think I know what is wrong with him.

Fast forward to now, I have had a crash course in CGD along with my parents.

I can't go fishing and fishing was the one thing I loved to do. Fresh water and salt water are full of bacteria that my body can't fight off. I can't plant a garden which I do with Dad every year because of the fungi and bacteria in the soil. I have to wear a mask outside and in public settings. My public settings are mostly trips to the doctors' offices. I have more lists of what I can't do than what I can. I can't have carpet in the house or cloth furniture. We live in the country and everything around me outside could potentially kill me.

I need a stem cell transplant or bone marrow transplant which people are more familiar with. I will be getting one because God has blessed me from birth. Yes, I have a terrible disease but I'm still here and probably shouldn't be if you look at statistics. I know God has a bigger plan for me if nothing else all these doctors that have seen me and have been working on me know what I have. Mom said that those doctors will never forget my case and someday they will have one similar and know what to do for the next kid. Mom calls me her Miracle Superhero, Dad still calls me the greatest love of his life. Yes, my parents can be embarrassing, with the love stuff.

As you might have guessed and an out-of-state specialty hospital and a transplant are financially devastating. My mother has had to quit her job to take care of me because her FMLA has run out and I still need constant care at home. Mom will be staying with me at Duke University Hospital for an average of 100 days during the chemo and transplant process. I never knew you would have to have chemotherapy if you didn't have cancer. That is another story. We are all getting a new education in life. Dad will be working and face-timing me while Im there. Dad will come down on the weekends and has to take over if Mom gets sick. Someone has to take care of things at home. I'm going to miss Dad, we already have missed our adventures this year, and depending on when I get the transplant I will be spending another Christmas in a hospital. For you that know my family Christmas is "The Holiday" at our home. We go all out with decorations.

My parents have planned for my future since I was diagnosed with Autism when I was in the 5th grade. No one could have predicted CGD and what they are doing to keep me healthy now and keep my mother healthy in the future. My mother is an x-linked carrier of this disease, she had no idea until I was diagnosed and the doctors did genetic testing on me and blood tests on her. At some point her good cells will start only reproducing the mutated cells and have to start treatment also, her neutrophil counts are at 33%. My parents still keep their focus on getting me healthy again.

The expenses that are coming up and currently are being dealt with are huge. We have been blessed with some donations already but we are in need of more. My Mom and Dad have been listing stuff to sell and I see their struggle every day. They try to hide it but I know it's there. The expenses include medical bills, home modifications, travel expenses. Thank you all for reading my story. All donations are a blessing, if you can't donate please pray for us. Our faith is stronger each day.