Editors Note: This story originally appeared March 24, 2015. The content includes updates on new research. 

PHILADELPHIA — On a September day in 2008, a Catholic father paid the ultimate price to save his son with Down syndrome from drowning in an accident on the family farm.

Now, 11 years later, Thomas Vander Woude’s self-sacrifice continues to save and improve the lives of people with the chromosomal condition through a research fund established in his honor.

Three years ago today, on March 21 — World Down Syndrome Day, in honor of the condition, where people are born with trisomy 21 — Jerome Lejeune Foundation USA established the Thomas S. Vander Woude Memorial Fund for Down Syndrome Research, a permanent research fund that aims to provide $250,000 annually in grants for Down syndrome research helping to pave the way for new therapies both for unborn children and adults with Down syndrome.

Angels in Disguise, a Louisville, Kentucky-based nonprofit that provides education, awareness and support sources for Down syndrome, provided the initial funding to the Jerome Lejeune Foundation to establish the fund honoring Vander Woude. The foundation is named for the medical doctor who discovered the cause of Down syndrome and worked tirelessly to save babies with the genetic condition from abortion. Declared a “Servant of God” by the Church, his canonization cause is open. Pope St. John Paul II asked the French scientist to help him found the Pontifical Academy for Life.

“We believe that research for people with Down syndrome is so very important, and I have such high regard for Dr. Jerome Lejeune,” said Penny Michalak, co-founder of Angels in Disguise. “So, with that, I thought, ‘What better person to name that grant for than Thomas Vander Woude, another hero of people with Down syndrome?’”

On Sept. 8, 2008, Vander Woude, 66, was working with his 20-year-old son, “Josie” (Joseph), who has Down syndrome, on their Nokesville, Virginia, property, when Joseph fell through the cover of a septic tank and began to drown. Vander Woude plunged into the sewage, and for 15 minutes, he lifted his son’s head above the filthy waters, while he himself was submerged, until help arrived to pull Joseph out. Vander Woude was pronounced dead by medics shortly thereafter, but his son lived, miraculously suffering no permanent adverse effects from the toxic fluid he ingested.

Vander Woude’s death made a big impact on Michalak, who, with her husband, started their organization that same year, when their daughter Elena Rose, who has Down syndrome, was born. They were friends with one of Vander Woude’s seven sons, from whom they heard the story, and wanted to honor the father’s heroism with this grant through the Lejeune Foundation.

Michalak said Vander Woude’s sacrifice is such a “contradiction” in a society that typically devalues people with Down syndrome and allows so few of them to be born.

“Here’s this father, who dived into the septic tank and holds up his son for an almost impossible amount of time to save him,” she said. “His son must have meant something [special] to him.”

 

Saving More Lives

Mark Bradford, president of Jerome Lejeune Foundation USA, says that the scientific advisory board determines which research projects to support from the Thomas S. Vander Woude Memorial Fund.

“I think Tom Vander Woude’s death, with the memorial fund that provides funds to hasten the speed of research will continue to improve lives,” Bradford said.

The Jerome Lejeune Foundation internationally funds $6 million in Down syndrome research projects each year.

Bradford said Jerome Lejeune Foundation USA also supports research into prenatal therapies that could provide much better developmental outcomes for babies with an extra 21st chromosome.

“We have these new, non-invasive prenatal screening tests that are simple blood tests of the mother’s blood,” Bradford said. Right now, he said the tests pose a “real threat” to unborn babies with genetic conditions such as Down syndrome, as nine out of 10 mothers will choose to abort their children upon receiving that diagnosis. The abortion rate is even higher for unborn babies diagnosed with other trisomy disorders, and the concern is that the new tests will “just exacerbate that problem.”

Bradford said abortion is not an option that most parents want, but they often feel pressured by the medical establishment and family members who tell them that they could not welcome or care for a child with disabilities.

But the equation will change if mothers are provided a more hopeful outlook for their children, Bradford said, adding that they have worked on human trials for a prenatal antioxidant therapy that has had enormous success in mice.

“At that 10-week test, a woman may be given the possibility to begin a regimen of treatment with antioxidant therapies for her baby that will result in a near-typical birth,” he said. “So this might change the story with a prenatal diagnosis to one of hope for families, rather than despair and fear leading to abortion.”

Bradford said the prenatal therapy could be a real “game changer” for unborn babies with a trisomy diagnosis. The tests conducted for the antioxidant therapy thus far, he said, have showed mice born with an extra chromosome “behaving pretty much like the wild type mice that have no trisomy.”

Besides supporting this type of prenatal research, Bradford said there is vital research ongoing into adult therapies “that could improve the lives of individuals living with Down syndrome now.” That research is directed toward improving cognition, speech and memory throughout the lifespan.

 

‘The Finest Man I Ever Met’

Timothy O’Donnell, president of Christendom College, where Vander Woude served as the athletics director for five years, said the father of seven was “the finest man I ever met.” He recalled that both Vander Woude and Joseph were known to be inseparable on campus, and their presence was much beloved by the college’s community.

“He died as he lived,” O’Donnell said, adding that the memorial fund is a “beautiful tribute” to a man whose heroism and ultimate sacrifice for his son stood in stark contrast to today’s “throwaway culture.”

“My hope is that, through recalling his story, other people, when they hear that perhaps their child has Down syndrome — instead of despairing, will realize that there is a precious gift here, a gift that can be nourished and helped to reach its full potential,” O’Donnell said.

“It also gives you a certain comfort that things don’t happen by accident. It’s all part of God’s providential plan, so now the good of the act Tom did to save his son is even reaping greater fruits now.”

 

To contribute to the Thomas S. Vander Woude Memorial Fund, please call The Jerome Lejeune Foundation (703-881-9160) or send a donation to: 
Jerome Lejeune Foundation USA
ATTN: Vander Woude Memorial Fund
11654 Plaza America Drive, #238 
Reston, Virginia 20190
 

 

Peter Jesserer Smith is a Register staff writer.