Local Family Continues to Pay It Forward for CDH Rockstars

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There’s a saying that “Faith as small as a mustard seed can move mountains,” and for three years running, Rockaway Park parents, Brian and Jean Williams’ steadfast faith kicked off an amazing local momentum to bring congenital diaphragmatic hernia (CDH) awareness to the forefront—for little rockstars like their son, Ryan Williams. Now the Williams’ are back at it again, hosting the Third Annual Cherubs CDH 5K Walk/Run fundraiser on Saturday, April 13.

Three years ago, in the face of a prenatal CDH diagnosis when Jean was just 16 weeks pregnant, the couple decided to go ahead with the pregnancy, despite doctor’s advice that they should abort because of the low survival rate of CDH.

According to Cherubs, a nonprofit, grassroots organization dedicated to promoting CDH awareness and research, this birth defect is so rare—it occurs in one in every 2,000 babies, of which 1,500 are delivered and with a 50 percent survival rate—only approximately 750 survive. CDH occurs when the diaphragm, the thin sheet of muscle separating the chest from the abdomen, does not fully form in utero and has a hole, where the spleen, stomach, intestines and even liver migrate up into the baby’s chest, pressing against the lungs and even shifting the heart over.

Despite the dire pronouncement, after tireless hours of research and finding a NYC hospital that could help their baby’s chances to defy all odds and live, Brian and Jean decided to put their faith forward for little Ryan.

Brian said, “When we found about Cherubs and the Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science (DRHEAMS) study at Columbia University Medical Center, it was a godsend. Once you empower yourself with information, and really do the research, it really gives a boost of faith that, ‘Yes, our baby could survive!’ It wasn’t an easy decision, but again, parents have to do the research. It’s all about taking a leap of faith, and we are forever grateful that we took that leap.”

Today, the Williams’ rockstar is thriving and attends nursery school. Like any average two-and-a-half-year toddler, he’s potty trained, talks like a parrot and loves to watch cartoons, “The Lion Guard,” and “PJ Masks.” Ryan also loves to play soccer, and last summer, even played with a kids league in Marine Park, Brooklyn.

And what’s even more inspiring about the Williams is that mom, Jean, gave birth just four months ago to their second son, Riley.

Parents who have had one child with an isolated CDH, meaning no problems other than the CDH, are at increased risk to have another child with the same problem. For most families this chance is approximately one to two percent or one in 100 to two in 100. If there is a known cause for the CDH, the recurrence risk depends on the specific diagnosis.

However, the Williams’ faith, as tiny as a mustard seed, moved mountains that proved once again that they were both ready and able to give Ryan a little brother.

When asked why he and his wife continue to make the Cherubs Run/Walk Race an annual event, though their hands are immensely full with two children, Brain said, “We are so happy with our two sons. Ryan is going to be three years this August, and it’s unbelievable to see him so full of life and health today. Life has truly blessed us, and this is why we want to keep paying it forward to everyone who stood beside us in this journey, and encourage other parents facing similar diagnoses to really do their research and not just succumb to fear. Fear is real, but faith can truly move mountains,” Brian said.

Registration and bib pick-up for the Williams’ Third Annual Cherubs CDH 5K Walk/Run fundraiser takes place on Saturday, April 13 between 9 a.m. and 10:15 a.m. at  Community House (101-19 Rockaway Beach Blvd). The run/walk events take place on the boardwalk at Beach 102nd Street. The Diaper Dash begins at 10:30 a.m., followed by the Kids race at 10:45 a.m., and the 5K Run/Walk at 11 a.m. Baby carriages are welcome. After the race, Community House will be offering a complimentary beer to runners and walkers. To sign up in advance for the race, visit: rockapulcorun.com. All proceeds will go to DHREAMS. For more information about DHREAMS, visit: cdhgenetics.com

 

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