Matt Lockwood - AUTHOR
42-year-old rabbi receives KS diagnosis, connects to community
Rabbi Ilan Glazer of Baltimore is 42 years old, and last month he was diagnosed with Kleefstra Syndrome.
This discovery came about tragically after Ilan and his wife, Sherri, were told by high-risk pregnancy specialists that their unborn son, Shemaryah, who was conceived through IVF had significant developmental issues leading them to make the heartbreaking decision to end the pregnancy. The University of Maryland genetics team did an amniocentesis to try and determine what caused Shemaryah’s condition and results showed a deletion in the 9th chromosome, which they thought was likely KS.
“They then sent my wife and I for testing to see if we might have a deletion and have passed it on to our son, and they told us that it was extremely rare, and no way would we test positive for a deletion,” said Ilan. “I did.”
Doctors at the Kennedy Krieger Institute told Ilan he has the mildest known case of Kleefstra Syndrome.
“While I never have had seizures or major cognitive impairment, I have had a lifetime of medical shmutz, much of which seems to correlate with Kleefstra,” said Ilan. “For years and years, I shamed myself for all the ways I felt my body wasn’t working properly, and in some ways, I feel like this diagnosis is a gift that our son Shemaryah gave me – now I can let go of much of that shame. I didn’t choose this, and it’s not my fault.”
Despite that gift, it’s also been emotionally painful.
“For my wife and I, this was kind of the end of the dream of having biological kids together. We are exploring other options as our desire to raise healthy children has been more than a little challenging. The grief is still very present, and we miss him terribly.”
After receiving his diagnosis and reading up on Kleefstra Syndrome, Ilan monitored KS social media accounts and eventually decided to share his family’s story on the Kleefstra Syndrome Facebook page.
“I’m grateful to everyone that commented on my Facebook post and reached out privately. Several parents said that my story is inspirational and gives them hope because their kids have all the same stuff that I described. And several asked me if I would talk to their children sometime, and I haven’t done that with any of them yet, but my response has been, yes.”
Conversely, Ilan – who is also an author and addiction recovery coach – has been extremely impressed by the KS community.
“What I’m struck by is the lengths to which Kleefstra parents go to make as good a life as possible for their kids, it’s very touching. I have so much respect for the parents who are bending over backward and learning all sorts of things that nobody should ever have to know. That inspires me.”
Ilan plans to stay connected to the KS community, including gathering with other KS families in the Baltimore area, and helping in any way he can.
“Finding the Kleefstra community has definitely been helpful to me. I didn’t know that I needed this community, and I’m grateful to have found it, and fellow travelers on the journey of healing. I hope and pray that healing and peace comes to all of our families.”