When Andrew was born he was pink and perfect. He was the first child born to proud parents Andy and Cyn. But by age two it became clear that all was not right.
After suffering infection after infection, multiple hospitalizations, and a platelet transfusion, doctors first thought Andrew had Leukemia. Another week of testing led to the diagnosis of X-Linked Agammaglobulinemia or XLA.
As a Primary Immune Deficiency Disease, little Andrew’s body lacked the ability to make B-cells, which meant his body was unable to make antibodies.
Andrew is now a teenager. He looks healthy on the outside, but his body is vulnerable and he has to be very careful to avoid getting sick.
Andrew’s illness has impacted the entire family. All activities including family outings, school, camp, and work are scheduled around his infusions. Andrew’s dad has to make career decisions based on health benefits. At times, Andrew’s sister has to take a backseat. As Cyn explains, “Andrew gets a lot of attention. As hard as we try to make things even, it never is.”
Cyn discovered Starlight while researching ways to help Andrew and the rest of the family better understand XLA. Starlight Escapes lift their spirits and provide an opportunity for the family to make happy memories outside of the hospital. Cyn jokes that everyone in the family appreciates that Andrew’s illness has been their ticket to more fun and adventure through Starlight! They spend quality time exploring local attractions, going to the movies, and hanging out together.
Cyn says, “We try to have an appreciation for what we have and that we are lucky. We can't sweat the small stuff.”