When our son Drew was one year old, we noticed he didn’t behave like other children his age.
Drew would never leave my side to play. He would refuse to step onto curbs or any other type of step. Even with the slightest touch, he would cry in pain. He would only move from his bed to the couch and back again.
These symptoms, along with ear aches, infections and colds that never seemed to go away, were just the start of the discovery of our son’s condition. One Saturday, when Drew was about two and a half, he came to me with a rash on both of his legs; the following Monday, he came to me with a bloody nose—the rash had spread from his legs to other parts on his body, and he was bleeding in other places as well.
Our doctor immediately sent us to the emergency room, where after 16 hours of waiting, we were finally referred to Children’s Hospital in Orange County. Drew spent the next week in the hospital’s controlled Cancer Unit. After every test one can imagine, Drew was diagnosed with X-linked Agammaglobulinemia, which is an immune deficiency disease that causes the body to be unable to produce anti-bodies to fight off infections.
Instead of being depressed about the new hand we were dealt, we decided that the best form of action was to educate ourselves about what we were dealing with, how Drew could have contracted it, if there were other families in the same situation, and, if so, how these families dealt with it in their day-to-day lives.
Our choices began to become more constricted and planned out than before. When offered jobs, my husband’s first priority became the medical benefits our family would receive. I became preoccupied with the maintaining of infection risks, finding social groups to help us, finding other children that Drew could relate to, and giving our daughter Michaela her own personal time — she’s had the worst time coping with the amount of attention we give to Drew because of his illness.
As Drew’s condition has progressed, we’ve had our share of difficult times, as does any family with a child that is ill. There are always those moments that parents never want to see their child experience—we’ve actually become accustomed to them.
About three years ago, we were introduced to Starlight. Attending Great Escape events has been so great for our entire family; we’ve been able to meet other families with similar situations, sharing and venting about our daily concerns and challenges. On occasion, just the thought of being able to attend a Starlight event has proven the perfect dose of determination needed to help Drew get through some painful medical tests.
Starlight has certainly offered our family distractions from our worries and pain. It has become an important part of my family’s life, giving us fun we all participate in together.
- Cyn, Starlight Mother