Blake

Blake is a happy 7 year old from Maple Valley. He is in 2nd grade at Glacier Park Elementary and loves learning and making friends. He is our resident Dinosaur and Pokemon expert, ask him anything and he will come up with an answer. He loves his 4 year old brother, Bryce, even though they fight all the time. He loves learning about animals and has quite the collection of stuffed friends. Upon first meeting him, you would never guess that he has a terminal rare disease. You would never guess the things he has been through and he won't go out of his way to tell you about it because it's just a normal part of his life.

Blake was born with an extra thumb, mild hearing loss in one ear and mild hypospadias. His extra thumb was removed at Seattle Children's Hospital when he was only a year old. The doctors at Children's suggested he see a geneticist to see if any of his abnormalities were connected. After nine months and many tests, Blake was diagnosed with Fanconi anemia when he was almost two years old.  

Blake's family was almost immediately connected with The Fanconi Anemia Research Fund  and were able to attend Camp Sunshine  the following summer. At Camp Sunshine in Casco, Maine they connected with other families who were going through the some of the same things they were. That's where Blake met Isaac and Avery. Now the Robison family travels to Maine every summer to continue making those irreplaceable connections to other families who are affected by Fanconi anemia. 


Since Blake's diagnosis, he has undergone more blood draws, pokes, doctor appointments, procedures and biopsies than the average adult. He is only 7 but one of the bravest people you'll ever meet. In May 2018 Blake underwent a life saving bone marrow transplant. He received new cells from a donor, a 24 year old female from the United States. Bone marrow transplants are a grueling process to begin with, but Blake's Fanconi anemia makes it even more complicated. People with FA cannot handle the same kind of radiation and amount of chemo that a normal transplant consists of. Transplant was one of the hardest things that Blake and his family has ever gone through. Blake endured chemotherapy, 40+ days in the hospital, extremely painful mouth sores that lasted for weeks, a central line, numerous side effects, he was unable to eat for weeks, vomiting blood, fatigue, isolation and much much more.


Now that Blake is 1 year out from his transplant, he is finally going back to school and can be around people and crowds because his immune system has built up enough. It's still not 100% and he has to receive all of his vaccinations over again just as if he was a new baby. A lot of people ask if Blake is now cured because he had a bone marrow transplant, the answer is no. His blood is now corrected, but the rest of his body contains the defective Fanconi gene. This means that he is at a much higher risk of cancer and other complications as he gets older. The average age for people with FA is 33 years old. 


Blake and his family live life to the fullest everyday. They fundraise for FARF because that is one thing they can control with this awful disease. Supporting research so that Blake and other kids with FA have a better chance at living a LONG happy life is a high priority.

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