Brandon (also known as Beemer as his initials are BMW) will be getting a Bone Marrow Transplant at Seattle Children’s Hospital in April 2019 through cord blood, as we have yet to find a regular bone marrow donor through the registry. This will require us to travel from Alaska for a six to eight month stay in Seattle.
Brandon was hospitalized at 2 weeks old for a high fever and swollen lymph nodes. Many tests were done but they couldn’t find the reason he was getting so sick. Dr Brand, from LaTouche Pediatrics in Eagle River, Alaska, had a hunch and ordered a very specific test.
Brandon was diagnosed with Chronic Granulomatous Disease on May 16, 2014 at just a month old. Brandon had almost died because of a yeast infection. He was given an anti fungal and immediately started to get better! Praise God! CGD means Brandon is missing part of his immune system causing him to get extremely ill. He has problems fighting off fungal and bacterial infections. His life expectancy is barely into adulthood.
Brandon has had multiple surgeries, has been hospitalized multiple times, has constant GI issues, takes a ton of medication daily that have their own horrible side effects, and receives injections 3 times a week that make him feel like he has the flu.
A bone marrow transplant, if successful, will cure him of this horrible disease and let him live a long and happy life. The daily life of Brandon can be very rough. There are SO many things he can’t do that other children can. He is extremely delayed in talking, is super short compared to other children his age, and misses a lot of school for being sick. But don’t let that fool you!
The personality and attitude of this child is legendary! His antics will make you chuckle daily. Brandon’s amazing Special Ed Preschool teacher, Ms Angie, wrote a line in his report card that said it the best, “Brandon is the feistiest Preschooler there ever was.” Follow Brandon on his facebook page, “Beemer’s BMT” to see all the funny things this little active man does daily and to follow his journey to being cured!
Here is an article written about Carly (Brandon’s mother) and Brandon: https://www.livingwithcgd.org/one-moms-positive-outlook-on-cgd/
If you’d like to know more about Chronic Granulomatous Disease please go to one of these sites:http://www.cgdsociety.orghttps://www.cgdconnections.comhttps://www.livingwithcgd.org