I have never taken the time to write about the financial aspect of having a sick child. Its a personal thing, its a difficult topic, its a sensitive issue for many people. That all being said, I have watched friends struggle, my family has struggled, and the vast majority of the public assumes that either insurance covers everything or the government steps in to help.
The majority of middle class families who have a sick child have a primary insurance company. Primary insurance covers (for us) 80% of medical procedures with in network doctors. We have a maximum of $3000 out of pocket. After that is covered, insurance covers all procedures. They do not however, cover all medications. Our monthly pharmacy bill alone is upwards of $300 a month. Laboratory Billing is separate, Imaging billing is separate, medical equipment is separate.. and so on and so forth.
We do not qualify for SSI because my husband, our sole provider makes too much money for a family of six. Applying for a deeming waiver for medicaid has proved to be exhausting and loathsome, and difficult. We have been denied. I need to reapply because the time in which I had to appeal has expired. I let the ball drop. What ever.
Why am I telling YOU this? Well… heres the thing…. I have a friend, who has a sick child. This friend holds fund raisers to raise funds for his family and other families like his. Every few months they hold a small comedy show or event, something fun, a nigh out, nothing asking for large donations. Just something that can happen with in the most basic of circumstances.
It is my observation that when a child is initially diagnosed with an illness, a family is showered with support from well meaning friends and family. They are loved, and people are eager to show it. But childhood illnesses such as leukemia, take YEARS to fight. And eventually the child who is fighting for their life, becomes well, not so sensational. And people go back to their every day normal, while the sick child’s family struggles to hold on to any semblance of normal that they can hold on to.
Finances dictate normalcy to a child. Siblings want to play sports, take dance classes, and when physically strong enough, the sick child would like to do the normal things other kids his age are doing as well. Do you know how much it sucks to tell your kid “Sorry honey, you can’t play basketball this year because we just can’t afford it.”? I do. It sucks. A lot.
So, my friend Tommy saw a way to gather friends, gather support, help his family and other families like his own. He has asked people to come out and show their support. And well… 2 years into his son’s battle with leukemia, he is seeing the support slowly trickle away. He is disheartened and disenchanted. It breaks my heart to see another parent feel jaded by the outside world. I chose to distance myself from the world when I had Kailey. Tommy chose to put his faith in his friends and his community when his son was diagnosed with leukemia. I know that Danny has had tremendous support so far, but he deserves support all the way through. He is a little titan! His story should be one with an ending as big as its beginning! Danny deserves an entourage the size of a stadium.
So, I’m writing to remind you, that we, the parents of sick kids, we rely on you… our friends, our family, our community… to continue to show your support, year after year… because the battle continues long after the initial diagnoses. The battle continues and gets worse, and sometimes gets better… but it continues and we are not “so strong”, we are along for the ride. Our children are strong, our children are amazing, we, the parents… rely on you the outside world to lend us strength… because sometimes we are running on empty, and facing tomorrow seems impossible.
Friends of Danny
10 Highland Ave
West Islip, NY 11795