Ilysse and Josh Ratner were standing outside The Valley Hospital in Ridgewood, NJ, waiting for the valet to bring their car around when a gust of wind hit their backs.
"You feel this?" Josh asked his sister. "That’s dad finally breathing."
On that spring morning April 18, 2005, a brother and sister lost their father, Michael Ratner of River Vale, NJ, to Alpha-1 Antitrypsin Deficiency, an inherited condition that can cause serious lung and/or liver disease. Looking back at that day nearly 10 years later, Josh recalls that moment as "a sense of relief he wasn’t in pain anymore." There’s no cure for the disease, but with help from a double-lung transplant, a patient can survive. If only Ratner had been that lucky. He was one of the next on the organ donor list, but it had been too late. He passed away just two years after he was diagnosed. He was 48.
On March 28 from noon to 4 p.m., the Ratners are planning a wine tasting in celebration of their father’s memory and Josh’s 30th birthday at Pig and Prince in Montclair, with a "Let It Breathe" theme – playing on the concept of both wine and lungs.
"When you lose your father, your whole life turns upside down," says Ilysse. "[We] never thought this would be the outcome. [It was a] shock for us and for the community."
Former longtime River Vale Mayor Joseph Blundo, an acquaintance, remembers Ratner as a "very thoughtful, caring person who had a deep love for his community." Ratner, who worked in the educational technology field, was active in the education sector in the town with his wife, Nancy, who has worked as a special education teacher at Meadowbrook School in Hillsdale for two decades.
"[Ratner] was very involved in the community," Nancy says. "He was going to board meetings and expressing his thoughts and concerns. [He was] never afraid to speak up."
Ratner was the past president of the Pascack Valley Gridiron Club and baseball and football coach; he was a 10-year board of education member for the River Vale school district and president for two.
"Sometimes people get involved for selfish reasons. It was evident he was in it for the betterment of the community," said Blundo. "[If] naysayers tried to cause trouble, he held his ground when people were fazed. That’s the legacy."
"He and I were really close," says Josh. "You start to do things in life you don’t realize why you were doing … [I’m a] Radars football fan; dad was. I don’t think there’s anything I enjoy doing that my dad hasn’t enjoyed doing."
They also both loved the Yankees. Josh recalls running into Blundo with his dad on a trip to a baseball game in the 1990s.
"It was nice to socialize with him outside the grind of local politics and enjoy [a] common love of baseball," said Blundo.
Ratner’s family said he was relatively healthy during his life. It wasn’t until Christmas in 2002, when he had what Josh called a "really bad asthma attack" for the first time. While he had previously been misdiagnosed with asthma, doctors discovered he had Alpha-1 the following month after giving him a random test of what his doctor had told the family would probably come out negative. To his chagrin, in his 25 years of practice, the test was positive.
Leading up to the time of his death, Ratner was on oxygen 24 hours a day and was wheelchair-bound. Josh describes his father’s breathing patterns as taking about five breathes for every one breath a person takes who does not have the disease.
In the time he was sick, Ratner had been on alpha-1 augmentation therapy to slow the loss of lung function. In March 2004, he was put on a transplant list, at which point his lung function had decreased to 13 percent. A third of his lung capacity had deteriorated within a year, Josh said.
From the time he was diagnosed, the family never thought they would lose him or gave up hope for a transplant. They remained optimistic and set up fundraisers to benefit the Alpha-1 Foundation as well as spread awareness about the genetic disease.
"[It was] never in our heads we were going to lose him," said Ilysse. "When this diagnosis came, there was only so much we could control."
What the family could do, however, was raise money while they waited for a phone call from the hospital with the news of a double-lung transplant donor. Through robust outreach efforts, Ratner helped organize a "Jeans for Genes" fundraiser at the River Vale school district that year, in which faculty members contributed $10 to the foundation to wear jeans to work, and then involved schools in the Pascack Valley.
The following year, after sending out letters to school boards throughout the county, the family raised more than $3,000 for the Alpha-1 Foundation with 23 school districts which participated.
While working as a waitress at Chili’s, Ilysse held a fundraiser at the restaurant and donated all of her evening’s tips to the Foundation. The nonprofit, headquartered in Miami, FL, is committed to finding a cure for the disease and improving the lives of people affected by it.
"He had hope," said Nancy. "One fortunate part of this disease [is] there is hope. Our hope [was] he would get [the] lung transplant and survive the lung transplant."
Nancy said her late husband was the next person scheduled to receive a transplant the day before the condition eventually claimed his life. Although he wasn’t able to receive one, Ratner was an organ donor himself. and his corneas went to a patient in need.
After he passed away, flags were lowered to half-mast in River Vale and a police escort accompanied the family to Ratner’s funeral. A Japanese maple tree was planted with a plaque underneath in front of Roberge Elementary by members of The River Vale Education Association. Michael Ratner School Service Award scholoraships were created in Ratner’s honor and offered to students annually for their school and community service work.
"Since he died, the fundraising has never stopped," says Ilysse. "He always wanted to make a positive change and help those who need it; that’s what my dad taught us to do."
Every year in the Hillsdale school district, Nancy continues the "Jeans for Genes" fundraiser. During his senior year at the University of Rhode Island in 2007, Josh, who was president of his fraternity, held a "Run for Lungs" fundraiser in which the sororities and fraternities participated in a softball tournament and raised roughly $20,000 for the cause.
At the March wine-tasting, a silent auction will include gift certificates to restaurants, gift baskets, vacation packages, and Beatles memorabilia signed by Ringo Starr and Paul McCartney. Angela McBride, director of community relations and development at the Alpha-1 Foundation, will also be there. Tickets are $50, and proceeds will benefit the Foundation.
"[It’ll be] great to see everyone come together. It’s been a great 10 years for me," said Josh, who is now the father of a 2-year-old son, Mason. "It’s been a remarkable growth [for me] as a person."
"It’s hard to be a mom and see [what] children go through when they lose a parent," said Nancy. "The way I’m now looking at this, through the eyes of my children, is we never had the opportunity to celebrate Mike’s life, and Mike’s life was so much to celebrate. He was just such a presence in anyone he met and everything he did."
Ilysse says she wants to take what was once a difficult time in her life and turn it into a positive by raising money for a "wonderful cause."
"Ten years later, I miss my dad," she says. "[When] I feel a little brush of wind, it’s a little reminder that he’s with me and with all of us."
Get information about the event here. For tickets, visit letitbreathe.brownpapertickets.com. To learn more about Alpha-1 or to make a donation, visit alpha1.org.