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Rayni’s story (Anja Wehrmann is racing in honor of Rayni)
I have the honor to Race Across AMerica for Rayni, who is 9 years old. Rayni has pulmonary hypertension and SCIDS
(Severe Combined Immune Deficiency) and is waiting for a lung transplant since the year 2000. She spent a great
deal of her life in hospital and doesn’t know life without illness.
Rayni can not go to a regular school because it is very dangerous for her to be exposed to childhood illnesses. She has a teacher that comes to their home for 2 hours a day. She misses out on a lot of the socialization that would happen at school. She is very close to the kids that are part of a non-profit organization that was started in her name, RayniDayMiracles.org, but is also active in church and has a couple close friends in here home community. Rayni wishes she could be without her central line and oxygen, so she could go swimming like other kids, but she is also frightened of receiving a transplant and continues to hope that she will never have one. On the other hand she has seen it prolong and save the lives of her friends. "I don’t even think about my illnesses most days. When I’m in the hospital, I feel like I have a lot of support. I have one tradition. My grandma always comes up and brings me something. She does it with every grandkid though. When I have a line infection, I don’t feel sick at home but when I get to the hospital, it just makes me feel all yucky and sick. But, I still have lots of fun sometimes. And, other times I just sleep. I want people to donate their organs because it will help save lives, it could help save my life." Rayni’s mom says: "Rayni has had numerous surgeries and procedures and, amazingly smiles and laughs every day. She is an amazing miracle and there is no way I can describe to you why she is such a blessing to those around her." |