Father now a champion for testing after daughter’s death
Finding ways to stay safe during a pandemic, that discourages socializing and just about everything else, one must do what one can to maintain sanity.
For the past 20 years, and especially during COVID, running is what has kept me sane. March marks the 20th anniversary of my running “career.” It also marks the 20th anniversary of my daughter Lila’s death.
Lila died March 9, 2001, just before her third birthday. Lila died from Taysachs, a preventable inheritable degenerative genetic disease. It’s a terrible chapter in my family’s life that did more to shape my identity and more to change the course of my life than anything else.
I started running at the behest of a wonderful friend. Getting off of the couch after watching Lila die a slow, horrible death probably saved my life, although I thought the first mile I ran was going to kill me.
After Lila’s death, I quit my tech-industry career and started teaching middle school math and science. My wife and I decided to give our first-born healthy son, Gray, a sibling, but we did not want to risk another child needlessly suffering and dying — which brings me to something else I’ve done since March 2001.
Before my wife and I married, we knew that we were at a higher risk of harmful recessive genes lurking in our DNA. Like many Jewish couples thinking about having children, we sought out carrier screening. Twenty-six years ago, carrier screening was used to determine — with some accuracy — whether parents were carriers of some recessive genetic diseases that could be passed on to their children.
Unfortunately, mistakes were made with my test. Thinking we were safe from the diseases we were warned about, we went ahead and had our first child, Gray. We were fortunate that Gray wasn’t born with Tay-sachs. Our good fortune ran out 18 months later when Lila was born.
The mistakes made during my testing never deterred me from informing as many people as possible about carrier screening. Twenty-six years later, screening is incredibly reliable and is able to detect many harmful recessive
genes that cause many diseases in potential parents than ever before. It’s also increasingly covered by insurance.
I recommend one future parental partner get screened first. If a harmful recessive gene is found, then the other partner should get tested. If both parents have the same recessive gene, there is a 1 in 4 chance each baby will be born with the disease and a 1 in 2 chance each baby born will be a carrier for the disease, according to the U.S. National Library of Medicine. This brings me back to our third child, Gavin, healthy and wonderful like his brother Gray.
There are many ways to have a healthy baby without rolling the dice. Options range from preimplantation diagnosis coupled with in-vitro fertilization, sperm or egg donation, adoption and probably new techniques I’ve never heard of because I’m way past having kids! We chose the option that worked best for our family at the time.
If you’re trying to maintain your sanity during a pandemic, or anytime during your life, the last thing you want to see is your child debilitated, or dying, knowing that you could have prevented it from happening.
I’ve been running for Lila for 20 years. If I can prevent just one person from taking up running for a similar reason, I won’t stop talking about carrier screening.
Talk with your physician or a genetic counselor today about carrier screening. What’s in your genes? Don’t be rare and unaware. Know what you’re carrying before she’s carrying ... so you can stay sane!
Kevin Levine, 55, lives in Bexley