Bridgette Nathan is looking differently at Huntington’s disease now.
Ms. Nathan, a 24-year-old resident at Ferncliff Nursing Home’s Center for Neurodegenerative Care in Rhinebeck, will be part of a papal audience with Pope Francis at the Vatican with others from around the world battling Huntington’s on Thursday, May 18.
“I can’t even explain how great that will be for me. It’s unexplainable. I have not prepared yet what I will say (to the pope),” Ms. Nathan said.
She even told CNY that she was “glad” she has the disease because of the opportunity it is giving her to meet Pope Francis.
“I hope I’m an inspiration to all the people living with HD,” she said.
Alicia O’Keefe, program coordinator for the Center for Neurodegenerative Care at Ferncliff, believes Ms. Nathan is an inspiration.
“She actually said to me that she always thought having HD was a curse but now because HD has allowed her to have an audience with the Pope, she sees her HD as a blessing, which is amazing. When she said that, I had tears in my eyes,” Ms. O’Keefe said.
Huntington’s disease is a fatal genetic disorder that causes a breakdown of nerve cells in the brain, and imapirs an individual’s physical and mental abilities, according to the Huntington’s Society of America. There are about 30,000 symptomatic Americans and each child of a parent with Huntington’s has a 50 percent risk of developing the disorder.
There is no cure and care facilities for individuals with Huntington’s are limited. New York State has four facilities, including ArchCare’s 48-bed Terence Cardinal Cooke Health Care Center in Manhattan and the new 38-bed center at Ferncliff (story on Page 12), with the staff expertise and equipment to care for individuals with Huntington’s.
“(Pope Francis) was touched by a community in South America where 40 percent of the individuals in that one community have HD,” said ArchCare President and CEO Scott LaRue. “So knowing we’re one of the largest providers of services to individuals with HD in the United States, we were invited to the papal audience and we invited one of our residents, Bridgette, to attend that service. We’re really looking forward to the opportunity for her to have that experience with the Holy Father.”
Ms. Nathan was born in Jamaica and sent to live with uncles in the Bahamas and the United States after her mom’s battle with Huntington’s progressed and she could no longer care for Ms. Nathan.
Ms. O’Keefe met Ms. Nathan about 18 months ago through a referral from Columbia University’s HDSA Center of Excellence in Manhattan, which was looking for Ms. Nathan to become a resident at Ferncliff. Ms. Nathan was not a U.S. citizen, and Catholic Charities and ArchCare worked for nearly seven months to get Ms. Nathan a green card, which allowed her to become a Ferncliff resident.
“She’s taken on a tremendously positive spirit given the challenges she’s got to face every day and we’re proud to be able to give her the home she has now,” Ms. O’Keefe said.
“She goes up to all the residents and asks if she can help them. If we’re having a tour, she’s happy to meet them in the lobby. She encourages the family by saying this is a place where you’d want your loved ones to be. She does little jobs around the facility and goes to offices visiting. She really lightens everybody’s spirit.”
Ms. Nathan will leave for Rome on May 15, attend the May 18 papal audience and return to New York the next day.
“May Mary guide you safely there and bring you back to us safe and sound,” Cardinal Dolan said in blessing Ms. Nathan at Ferncliff April 12, when the cardinal celebrated Mass and blessed the new $4 million Center for Neurodegenerative Care.