Foundation and others offer assistance after a Blaine family saw two daughters through heart failure, then transplant and on to recovery.
Noel Rippy got a hug from daughter Madison, 6, while playing outside of their home last Wednesday. Madison had a heart transplant in 2009. She and her younger sister, Sydney, suffered from cardiomyopathy, which impeded their hearts’ ability to pump blood.
One family, two heart transplants, many hands extended in compassion.
Noel Rippy, of Blaine, recounted the harrowing drive to Children's Hospital in Minneapolis last month with his 3-year-old daughter howling in pain in the back seat. He felt little Sydney tense and then go limp in his arms as they entered the emergency room. He watched her crash and revive with CPR -- twice.
"That moment became so surreal," Rippy said. "I don't' think any parent should have to see it. The doctor stepped up and started doing CPR on my little girl. That tore me up pretty good."
Three years ago, Rippy and his wife, Linsey, were by the side of their other daughter, Madison, after she suffered seizures and heart failure.
Both daughters were diagnosed with cardiomyopathy, a rare condition that impedes the heart's ability to pump blood efficiently. Both now have had heart transplants, Madison in 2009 and Sydney last month.
The family is the first recipient of a national family assistance grant from the New Jersey-based Children's Cardiomyopathy Foundation, given through its Family Assistance Program. Although the foundation's founder, Lisa Yue, declined to specify the amount, she said the grant of less than $5,000 will help the Rippys cover the girls' insurance premiums and the property taxes on their home.
"It was a godsend," said Linsey Rippy. "That was immense that I don't have that worry about having that over our heads."
Yue lost her two sons to cardiomyopathy. While the disease is incurable, it can be treatable.
Posing additional challenges are the financial, emotional and other issues that invariably come with serious disease.
"Doctors are very good at treating the physical part of the illness, but in terms of living with a chronic heart condition, the families kind of feel like they're on their own," Yue said. "There's the emotional stress going through that, and knowing that if a family also has financial issues, that can be overwhelming."
Two more families, in California and Indiana, also have received help from the foundation, which receives funding from families who have experience with childhood cardiomyopathy.
While the Rippy family has insurance coverage, their medical ordeals have taken a financial toll. Linsey Rippy, who left her job to care for their two children, has been at the Mayo Clinic with Sydney since April 15; they don't expect to return home until July. Noel Rippy is trying to work and care for Madison. His employer, which works on manufactured homes, has suffered with the recession; although he has remained employed, there have been months when the company has been unable to make payroll.
There are lots of expenses insurance doesn't cover: gas, food, supplements, the face masks the girls have to wear when they go out. They still are not caught up financially, and friends and family are working to organize a benefit to help them.
Both Sydney and Madison, now 6, will have lingering effects from their conditions. They'll have a lifetime of anti-rejection drugs and other medications. Both have had developmental delays as a result of blood loss to their brains, but Linsey Rippy said she's amazed by how rapidly they're gaining ground. They both have had at-home educational therapy through the school district, and Madison will start kindergarten in the fall.
The Rippys have managed with support from family and friends -- real and virtual in the communities Linsey has found online -- and the Mayo Clinic staff who have become their friends.
They are thankful that both girls received their donated hearts within a couple of days after they were placed on the waiting list; the wait for children is longer than for adults and can last as long as six months. And the girls are improving by the day.
"We're optimistic," said Linsey Rippy. "You've got to be. What else are you going to be?"
Maria Elena Baca • 612-673-4409