Jonah’s Just Begun: A Family’s Tireless Journey To Save Their Son
Jill Wood is a deeply committed mom and fundraiser. And while she is not a scientist, she’s able to articulate details about her son Jonah’s Sanfilippo Syndrome as if she were an expert. That’s because Park Slope residents Jill and her husband Jeremy Weishaar are on a journey to save their son. And they simply won’t stop.
The story began when Jonah was 22 months old. His parents brought him to South Slope Pediatrics for a check-up, where Dr. Hai Cao recommended that Jonah undergo an MRI because of his large head circumference.
Before the MRI was given to Jonah, Jill says that her family was able to have a “Norman Rockwell Christmas.” Soon after, though, Jonah would be diagnosed with Sanfilippo Syndrome Type C, a disease that leads to the degeneration of the central nervous system. The family was sent home with what Jill describes as a “fistful of prescriptions” and a disease without treatments or a cure.
And that’s when the work began.
“Jonah is the youngest child to be diagnosed asymptomatic without having an older sibling diagnosed first,” explains Jill. She spoke passionately about Dr. Cao’s recommendations and subsequent fundraising efforts. “He has had a huge impact on my family in so many ways.”
Jonah will turn 7 years old on July 30 and currently attends P.S. 10 on 7th Avenue. In the roughly five years since his diagnosis, both Jonah’s family and members of the local community have done a tremendous amount of work. Jill and Jeremy formed Jonah’s Just Begun, a non-profit organization focusing on the goal to raise funds for scientific research groups to find treatments for Sanfilippo Syndrome Type C. In addition, Jill and Jeremy formed Phoenix Nest Biotech, a company that funds and enlists scientists. Phoenix Nest has won a grant for $230,000, however Jill makes it clear this is only the beginning.
In addition to the family’s efforts, many others have dedicated time and energy to find a cure. Dr. Cao and South Slope Pediatrics have been especially active. Dr. Cao and over 30 families formed a fundraising team to run in the Cinco de Mayo 5K in Prospect Park. In addition, Dr. Cao was involved in another fundraising event for MPS Awareness Day last month.
Film and television star Johnny Lee Miller has also been heavily engaged in fundraising for Jonah’s Just Begun. Jeremy, a cameraman for CBS, met Miller while working on the set of the CBS show Elementary. Miller has fundraised by running ultra-marathons for the cause and joined Jill at the Rare Disease Congressional Caucus in February 2014.
Although so much of Jonah’s parents’ focus is on fundraising and research, they simply want him to grow up as a typical child. Jonah is unaware of his disease. He sees Jill’s research and involvement as simply “mom’s job.” She asks: “How do you tell your child he has a terminal illness?”
While Jill and Jeremy don’t speak of the disease with their son, they do have concerns that Jonah might hear about it from friends and other students at school. Jill points out that those reading this article should also be aware that Jonah does not know about his disease and to avoid mentioning it if they see him around the community.
Jonah’s family continues to set challenging goals. “We are so fortunate to be surrounded by the nation’s best hospitals,” explains Jill, “but we have to find those scientists.”
Their hope is to raise enough money that the National Institutes of Health (NIH) will prioritize research on Sanfilippo Syndrome. Jill emphasizes that “Jonah’s Just Begun survives off of donations.”
What’s next? And how can you get involved?
South Slope Pediatrics and Jonah’s Just Begun will be co-sponsoring an upcoming fundraiser called Luau at the Lakeside in Prospect Park on Saturday, July 18 between 12-2pm. The event will be family-oriented, featuring an assortment of food and outdoor activities for children. Luau at the Lakeside will be a festive summer event for our community with a serious purpose: to help combat a rare disease that needs support and vision from our generous community.
