Read Casey's latest blog!
Billy Kimmel was only a few hours old when he began to make a difference in this world and potentially a world of difference for families with critically ill kids.
As you probably have heard, Billy’s father, Jimmy Kimmel, the late-night TV host, gave a heartfelt monologue on his usually upbeat show about the harrowing three hours when his newborn son, Billy had to undergo open-heart surgery.
“It was the longest three hours of my life,” Jimmy told his national TV audience.
As a mother of three and someone who has dedicated her career to supporting families with critical illnesses, Kimmel’s speech moved me.
But it also was a stark reminder of how many critically ill children there are and how so many of them are not fortunate enough to be born to a father like Jimmy Kimmel.
Ever since I created the Casey Cares Foundation, which is headquartered in Baltimore and serves families in seven states and Washington, D.C., I have worked tirelessly to make sure critical illnesses – whether is it is cancer, sickle cell disease, a heart abnormality or a rare disease even doctors have not figured out a name for – do not break families.
From the moment a child is diagnosed with a critical illness, their family life is turned upside down. Some parents have to quit their jobs to be at their child’s bedside at the hospital. Siblings get lost in the shuffle. The extraordinary financial and emotional burdens overwhelm families. Even the most stable, upwardly mobile families we have worked with have exhausted their bank accounts and their energy to continue raising their children with the activities that make childhood so special.
Our families and children need us all to pitch in for support. Even someone with Kimmel’s notoriety and wealth is not immune to the hardships that lay ahead.
I see it every day, as I am not only the mother of three, but the “mom” for the more than 800 critically ill children we will serve this year alone. Mother’s Day is rarely an easy holiday for the moms caring for children in our programs.
Just the other day, as we were planning an outing to an upcoming baseball game in Pittsburgh, a mother of a child battling a rare disease known as Hirschsprung’s Disease, which results in bowel obstruction and requires surgery. One of my staffers asked her if her son had ever been to a Pirates’ game before. The answer was yes, three years ago. They couldn’t afford tickets today.
The parents of this child are divorced, and the mom, now raising four kids on her own, has a Ph.D. in clinical psychology but was embarrassed to admit she could not hold a job because of her family demands.
What about on TV? Does her 11-year-old watch the games? The answer was no; the family can’t afford cable. The family has been in and out of homeless shelters. The opportunity for us to be able to send this family to a Major League Baseball game, including money for food while they are at the game, is more than this family could have asked for --- but far less than what this family needs.
While this an extreme example, it is not an uncommon storyline. We get emails and letters throughout the year from families who are debating whether to pay for prescriptions or to put food on the table so we created a program to provide grocery gift cards so our families do not have to make this burdensome choice.
We also make sure that we truly accommodate everyone in a family. Just because a child is sick does not mean the parents and siblings do not need some extra love. Every time we offer an activity, everyone in the family is included. If there are eight siblings, then all eight siblings, the child, mom and dad are in.
Which brings me back to Jimmy Kimmel and young Billy.
Thankfully, Billy’s doctors were able to take care of him, and he is on the mend. I am also thankful that Jimmy Kimmel realizes the importance of the weight of his voice. This is just the beginning for Jimmy Kimmel, his wife, and their family on this road to recovery. Doctors were able to repair two defects in Billy’s heart. According to news reports, Billy will need another heart surgery in three to six months, and another procedure when he's a teenager to replace the valve he has now.
Jimmy Kimmel has the stature and media bandwidth to bring this very important issue to light. We need him to be a beacon for critically ill kids.
One thing I am most proud of at Casey Cares is we have never had to turn away a family from our programs for financial reasons, but it is only because we have had many generous donors over the years to keep our programs afloat. I sincerely hope Jimmy Kimmel’s words inspire everyone to consider the needs of families who need it most.
Casey Baynes is the founder and executive director of the Casey Cares Foundation. Her blog will appear periodically on CaseyCares.org.
