NEW HAVEN — Jim Rawlings didn’t expect that the nearly 120-year-old house with the mansard roof and twin-columned porch entryway would take up so much time and money.
He’s just interested in helping children with sickle cell disease live a better life, using the house at 1389 Chapel St., across from the Yale New Haven Hospital’s St. Raphael campus as a base for the Sickle Cell Disease Association of Southern Connecticut’s educational and counseling services. But in preservation-conscious New Haven, you can’t just replace the bannisters and floorboards with new ones.
“You can’t do what you want to do. You’ve got to restore the stairway,” Rawlings said. “So now I have over here master carpenters who love this stuff,” he said of Christian Kling and his crew, who were busily re-creating the stairs in a historically accurate but sturdier, safer way. “Their hearts’ in this stuff … so he’s rebuilding it stair by stair,” Rawlings said.
Kling, owner of Window Master Real Wood Products and New England ReUse on Sackett Point Road in North Haven, salvages the hard-to-find hardwoods taken from old demolished houses, including old-growth chestnut that is no longer available since a 19th-century blight, and preserves houses like the one that will be named Michelle’s House, after former first lady Michelle Obama.
“The original stairs had a dovetail in the step” where the balusters were joined to the side of the staircase, Kling said. He’s done the same with replacement balusters, which support the hand rail. “What this does is it puts pressure on that [stair], really keeping it tight, a lot tighter than you could get with a nail or glue or anything.”
The original steps had a separate piece at the front, joined to the rest of the tread at the corners at a 45-degree angle, making them vulnerable to breaking off. Kling is maintaining the angle in a different way that will keep the stair strong.
But all this comes at a cost — $200 just for 10 balusters — even though Kling is giving the sickle cell association a discount. “I’ve cut my prices by a third just to try to make it affordable for him,” he said of Rawlings, director of the nonprofit organization. The stairway restoration normally would cost $30,000, Rawlings said.
A terrible disease
While he appreciates the care Kling is putting into rehabilitating the building, which at one point was threatened with demolition when it was owned by the former St. Raphael’s Hospital, Rawlings cares a lot more for the young people who face a shortened life of pain because of the genetically inherited disease that affects one in 10 African-American babies who are born with the trait.
The disease also affects Hispanics, with one in 25 born with the trait, as well as people from the Mediterranean, Mideastern, African and Indian regions. Rawlings’ eyes well up when he thinks about the children born with the disease because both parents carried the trait, probably unknowingly. “Sickle cell disease was the first genetic disease discovered, yet today there are other diseases that are
a third the size of sickle cell disease [yet] they receive up to 12 times the funding of sickle cell disease. How can that be?” Rawlings asked. “Why is it that this is the first sickle cell community house in the Northeast? … There are storefronts but they’re not comprehensive,” he said.
“It’s one thing to take on the challenges of this building, the balusters and the floors” — which he’ll carpet because he can’t afford to restore the pattern in the original floorboards — “but our work is going to help these young people survive. How do we reduce [the number of] these babies being born with sickle cell?”
Among the initiatives Rawlings is working on is having a check box on marriage licenses asking if the couple has been tested. “It prompts them to ask the question.” he said. “They may then go back and ask their parents or [say] ‘I want to get tested.’”
It’s important because the disease is growing in the state as two people with the trait have a one in four chance of their child having the disease and a 50 percent chance their child will carry the trait.n“Over the last five years the trait has increased 17 percent because of newborns,” Rawlings said. “The thing that makes it a major issue [in] social justice is that most of the people with sickle cell are poor, are on Medicaid.”
That is reflected in the research on curing the disease. “When I talk to the big drug companies, they tell me why Big Pharma does not see return on investment in sickle cell disease,” Rawlings said. It’s because the population tends to be low income.
He’s also frustrated by the lack of clinical trials in Connecticut. “If you’re in a small state, the clinical trials you’re exposed to is a small number,” he said. “The more population, the least expensive it is for recruitment.” He also wants to get the word out to families about clinical trials being conducted elsewhere in the country that they might take advantage of.
Sickle cell disease, which can only be cured by a stem cell or bone marrow transplant, is caused by malformed, weak and sticky red blood cells, which can get stuck in small blood cells, break and die, leaving the blood unable to transport enough oxygen to the body. Its symptoms include anemia, jaundice, swelling of hands and feet, aches and pain, especially excruciating pain caused by blood not getting through the small blood vessels to the abdomen, joints and bones, according to the Mayo Clinic. Sickle cell disease lowers life expectancy, and that life can be a struggle. “The average kid across the United States will repeat a grade 4.5 percent of the time,” Rawlings said. For children with sickle cell disease, the rate is 40 percent.
“We want to see these kids get out of school, put them in college,” he said. Among the problems facing sickle cell patients is that they end up in the hospital emergency room far too often. “They can’t keep a job,” Rawlings said. He wants to work with employers so “these individuals can have stable lives. They’re challenged financially. They have unstable lives. … How can we find a unique job so these families can have some stability.”
According to his data, a sickle cell disease patient has 5.6 times more hospital visits annually than average, with 20 percent going to the hospital 11 times or more a year. These visits have increased 24 percent between 2011 and 2015, Rawlings said. Nationally, 2.5 million people carry the trait for the disease. The total is 40,000 in Connecticut, with almost 1,000 having the disease.
The house, leased from Yale New Haven Hospital for $1, will be used for tutoring, in partnership with Southern Connecticut State University, and counseling sessions. Rawlings is seeking cooperation from churches and the New Haven Public Schools to help in the work. “We have to have new partners with churches, fraternal organizations,” he said.
“It’s not a building. It’s a place where we’re going to start to work with these families and work with the community.”
While his budget has been stretched by the preservation work, Rawlings said he will keep his promise to create a healing garden in the rear. “It’s going to be their area,” he said. “It’ll be soft. We’ll have a fountain out there.”
Originally, “I figured I could get this thing done” for $30,000 or $40,000, Rawlings said. So far, though, he’s raised $75,000 from the city, the Community Foundation for Greater New Haven and United Way of Greater New Haven. Other supporters include CVS, Yale New Haven Health, Yale University and Cama Inc. He’s also received in-kind donations from Turner Construction, PepsiCo and Partitions Inc.
Rawlings also has had students from the state technical colleges doing much of the work to restore the house, including heating, electrical and plumbing work. “They volunteered to help us with the project because it was so important,” Rawlings said. Many of the students are poor city students, some of whom carry the sickle cell trait themselves, he said.
Without their help and other in-kind donations, the project would have cost $200,000, Rawlings said.
Rawlings hopes for an opening in May and June, depending on when the work gets done and when he can get Gov. Ned Lamont and Michelle Obama to come for a grand opening.
Rawlings’ main focus is on prevention and education. “It’s really around education because I drive prevention,” he said. “I’m not an interventionist. [If] you can keep a population healthy, that’s more important to me. I can save thousands of lives preventively.
“I have never been in such a complicated fight in my life because this is not just intervention, it’s cultural,” Rawlings said. “It’s poor brown kids.”
Tears come to his eyes again as he says, “Health care is not a right in America and people are dying. I can’t let them die.”