Noah Johnson was diagnosed with a rare blood disease called Severe Aplastic Anemia at age 13. His bone marrow stopped producing enough vital blood cell varieties which caused his immune system to attack itself. Noah’s treatment includes extended hospital stays, bi-weekly testing, blood transfusions, chemotherapy and, finally, a bone marrow transplant from his 5-year-old brother, Lucas, These two will forever hold a special bond as brothers as they begin this transplant journey together.
“Noah and Lucas will forever share a special bond”
“Noah encourages everyone to sign up as a bone marrow donor.”
Walk us through the first few days.
Ryan & Nicole Everything happened so fast that none of us had much time to process it. One day Noah was playing football, going to school and playing outside with his friends. The next day he had red spots across his body, pale skin and physically exhausted all the time. When we rushed home from the river to take Noah to the Emergency Room, we never thought this would be the outcome. Seeing our son healthy one day and hearing that he could have died the next is nothing a parent could prepare for or think would be possible. There just wasn’t any time to think, just react.
How much did you know about aplastic anemia when he were first diagnosed?
Ryan & Nicole: We didn’t know anything about Severe Aplastic Anemia. We haven’t had any experience with this disease or the process to overcome it. We’ve also never known anyone to have this disease. This entire experience has made us aware of the imperativeness of donating blood cells, platelets and volunteering to be a bone marrow donor.
AA MDS: Aplastic Anemia is a rare disorder that causes an individual’s immune system to attack and destroy the body’s bone marrow. Fewer than 1,000 cases are diagnosed annually in the U.S. It is uncertain what causes aplastic anemia to occur.
How did your family & friends react to hearing your diagnois? Were they worried about you?
Noah: Yes, my family members were very worried. My mom and dad have been by my side the entire time and I can see how much they care about me. My cousins and friends feel sad that I have to go through this and want me to get better soon.
Ryan & Nicole: We had our good days and bad days. We took each day at a time and stayed strong for Noah. It was extremely hard to see our son suffer with this life threatening disease but we never let him see us cry. However, we had our moments when we broke down behind closed doors. Our son should be having fun doing kids stuff, not battling for his life in a hospital bed. Noah’s team of doctors told us that even with his brother, Lucas, as a bone marrow match, his chances of survival is 90%. That 10% is hard not to think about.
“Noah being transported to Rady Children’s Hospital “
Are you scared?
Noah: I’m not too scared because I’m going to get better. My parents and doctors have told me everything about my condition and I’m hopeful..
Ryan & Nicole: Noah’s old enough to understand what is going on, however we don’t share the true magnitude of the situation. We want him to focus on getting better and not to worry about the next steps. When he is free and clear of this illness, we will share the details with him.
What has helped your family remain positive?
Ryan & Nicole: We know this illness and process is temporary and he can overcome it. We still have a long and tough road ahead of us. Our family is strong and we’ll get through this together. God only gives you what you can handle and together we will overcome it.
Many may not know this, but after Noah was born we tried for 8 yrs to have more children with a couple of miscarriages and no success. We thought Noah would be our only child. However, God had another plan and we were blessed with our two younger children, who both are 100% bone marrow matches for Noah.
Our family and friends have showed tremendous love and support. Through social media and Rady Children’s Hospital they have put us in touch with many helpful resources. However, the future is still unknown. We will have struggles and we will be pushed beyond our means. Without the continued love and support we will get through this fight together.
“God doesn’t give us what we can handle, he helps us handle what we are given.”
Lucas Ryan my brothers donor!
The chances of living with aplastic anemia without a donor are 60%. It goes up to 90% with a donor. The process is performed through an IV which separates the needed bone marrow. The donor’s cells replenish themselves in 4 to 6 weeks.
Lucas is Noah’s 5-year-old brother and donor. Lucas’ least favorite part of everything is being poked by needles. Lucas will be admitted into the Rady’s Children Hospital for 2-3 days while they perform the bone marrow extraction process. During this time he will be under light sedation, while a machine circulates his blood over six times throughout his body, to extract the stem cells. They are estimating they will extract nearly 480 million stem cells. The stem cell will later be transplanted into his brother, Noah. Once Lucas is released from the hospital he will be able to continue his regular daily kidschedule. Lucas is excited for Noah to come home and play with him.
Noah: I love playing football. My biggest dream is to play professional football for the Dallas Cowboys, I’m not sure if that is possible anymore. My future goal is to graduate high school and go to the University of Arizona. Right now I want to focus on getting better so I can see my cousins and play with my friends again.
Football is one of our great pastimes. What is it that you love about the game?
Noah: I love playing football, basketball and golf. I really enjoy playing on a team, a lot of my friends have played on the same team as me! I’ve played sports since I was 5 years old. I’ve played tee-ball, baseball, soccer, basketball and football. My favorite sport I’ve played is football. I like the lights on the field, my parents cheering in the stands, it’s a great feeling. I love the Dallas Cowoys football team. I’ve never been to a Cowboys game before, but I hope once I get better I’ll be able to see them play at the Cowboys stadium. My favorite player is Dax Prescott, who is the QB for the Cowboys. He’s exciting to watch especially when he throws a touchdown, and he’s a really good player.
What’s your favorite football position?
Noah: Quarterback, because I love to throw the football!