At age 46, Ann Neidig passed away at Williamsport Regional Medical Center after a long battle with hypertrophic cardiomyopathy. Five days later, completely unexpectedly, her 22-year-old daughter, Alicia Hall, also passed away.
Hypertrophic cardiomyopathy, also known as HCM, is a condition in which the heart muscle becomes thick. Most often, only one part of the heart is thicker than the other parts. The thickening can make it difficult for blood to leave the heart, forcing it to work harder to pump blood. It also can make it harder for the heart to relax and fill with blood, explained family friend Marguerite Wolfgang, of Allenwood.
"It's a condition usually passed down through families," Wolfgang said. "It is believed to be a result of several defects with the gene that control heart muscle growth. The condition is seen in people of all ages."
Hall's sisters, Amanda and Alanna, also have the disease. Their brother, Alan Jr., does not.
Neidig received a heart transplant nine years ago from Hershey Medical Center. Hall received hers two years ago.
"I've known Ann since high school," Wolfgang said. "We faded away a bit. You know how people get after graduation. They were brought back into my life when I was working as a school nurse in Cochran (Elementary School). I was taking care of Alicia when all of her heart problems started. I was reunited with the family. I had stayed close ever since."
Wolfgang was with Hall when she received her heart transplant and considers them to be her family. She is in daily contact with Alan, Neidig's husband.
"Losing his wife, who's only 46, and his daughter five days later, who's only 22, it's sickening," Wolfgang said. "We all knew a month ago that Ann had a limited time with us because of left-sided heart failure. We didn't have a clue about Alicia. She died Sept. 3. Sept. 2, she was complaining about her belly hurting. The next day she was gone."
Neidig inspired Wolfgang to guide her children in the right direction, like Neidig did.
"Ann has taught me so much about being a family and watching over your children," Wolfgang said. "I'm trying to focus now on being a better mom because of Ann."
It was when Alan Jr., was in grade school that Ann went through the worst part of the disease until she finally got her heart transplant, Wolfgang said.
"The family back then went through some very difficult financial heartbreaks because of all this," Wolfgang said. "I put together a Christmas fundraiser for the family. ... Their entire Christmas was taken care of, which was awesome. It was nine years ago. Ann had just got out of the hospital and was able to go out in public and go to Lycoming Mall where we had this little party for them."
With no life insurance and savings depleted from traveling expenses, Wolfgang has been organizing fundraisers to help with the medical expenses.
"Basically, this family has nothing," Wolfgang said. "As a friend, this family means the world to me. It brings perspective to how fortunate I am in my life."
She decided to have a car wash, even before Hall passed away. It was held Sept. 8 at Advance Auto Parts in Montoursville. Kari Ulrich, cheerleading coach at Montoursville School District, got together with her middle school-aged cheerleaders, who volunteered their time to wash cars. Wolfgang's family also helped.
"The most powerful thing was, in fact, the amount of support we got from the public as far as donating baked goods," Wolfgang said. "They came from everywhere. Everywhere. People just came and dropped them off and then left. We raised $1,064.94 just from the car wash."
Shortly after the successful car wash and bake sale, Wolfgang began planning another fundraiser - a spaghetti dinner with dancing and entertainment provided by Mike Caschera from 6 to 10 p.m. Nov. 3 at DuBoistown Fire Hall. A Chinese auction also will happen at the same time. For tickets, Wolfgang can be contacted on her Facebook page or "The Annie and Alicia Hall Family Tragedy" Facebook page. Tickets also will be available at the door.
Those who wish to help and cannot attend can donate to the Alicia Hall Fund at Horizon Federal Credit Union, 1007 E. Third St., Williamsport.
"All those monies will then go to the family for funeral expenses and future medical needs of Alanna," Wolfgang said. "She is now in the stage where she is getting medical attention every six months. Her needs will increase for more medical needs because of this genetic heart disorder. Most likely, she will need a new heart transplant, but you can never know when that's going to happen."
Wolfgang has called the support from the community 'outstanding.'
"I'm totally overwhelmed," she said. "I'm from Williamsport and now live in Allenwood. I can honestly, from the bottom of my heart, say Williamsport has always been the community that pulls together in a tragedy. ... Because of all this, businesses have come together and people. My family has been absolutely incredible. It's very overwhelming. On top of losing one of my daughter's friends and her daughter that I've taken care of many years, it's sickening to my heart."
Since Wolfgang did help Hall as a school nurse, it shows how critical they are. While most times a child complains about a stomach ache it can be written off from nerves for a school test or from being bullied, it sometimes can show something worse.
"This disease is serious," Wolfgang said. "You want to stress to the public, to everybody, chest pain is nothing to deal with. You can't take it for granted."
Sometimes there are no symptoms and the disease may not be found until a routine medical exam. The first symptom many young patients have is sudden collapse and possible death. It is caused by abnormal heart rhythms.
"Basically, with Ann and Alicia, there was a lot of shortness of breath, heart palpitations, light-headedness, fatigue, fainting, especially during exercise, dizziness and chest pain," Wolfgang said. "Because of the fainting spells, exercise is very, very limited. I remember Alicia wasn't even able to carry her backpack in school or walk up stairs. She had to take an elevator and a classmate would take her backpack from place to place."
Doctors start with basic treatments, such as medication, to treat the abnormal heart rhythm and blood thinners to reduce the risk of blood clots. Both women had to receive permanent pacemakers. Surgeries can repair or replace any valves within the heart that are defective. In their cases, both needed the heart transplant.
HCM is a well-known cause of sudden death in athletes. Almost half of the deaths related to it happen during or just after the patient has done some kind of physical activity, she said.
"I don't care what age you are," Wolfgang said. "If your child is 4 and constantly complains of chest pain, don't brush it off as heartburn. Get them to a doctor. Life is short."
