Any positive break from the routine is welcomed for Traci Fraelich.
The single mother from Newton Falls has been the primary caregiver for daughter Ella Marquette, 10, since she was born with a structural abnormality in her brain.
“When you’re at home and isolated and doing complex medical care for your child 24/7, you feel like you’re alone and the only one going through it,” Fraelich said. “It’s heartwarming to know there are people out there who recognize that.”
The people she’s referring to are Denise and John Hirschbeck, founders of the Magic of Michael Foundation in the Youngstown area. Each year, the Hirschbecks adopt palliative care families around the holidays and bring them a dose of Christmas cheer.
Traci and Ella were among five families showered with gifts from the Hirschbecks this year, from art supplies to coloring books to Disney princess dolls to a hoodie, other warm clothes and some books. Denise watched Ella excitedly open her gifts via a remote live feed.
“I think you set a record for opening gifts,” Denise told Ella as she raced from package to package with a huge smile on her face.
Denise, with help from one of her daughters, personally shops for and wraps each gift.
Magic of Michael, in memory of their son
The Magic of Michael Foundation was created in the memory of the Hirschbecks’ son, Michael, who passed away in 2014 from complications of (ALD), a genetic brain disease.
“I just can’t imagine how she (Denise) does it. Reaching out to my child after she literally lost her own. What a heart!” Traci said.
Traci left her job as an emergency room nurse to care for Ella full time.
“As a parent you just accept the situation and do your daily care, but truthfully it’s the most difficult thing I’ve ever done in my life,” Traci said. “The worrying, the caring, the troubleshooting. You’re a mom, a nurse, a teacher and a counselor because it can be so stressful for Ella.”
As evidence, Fraelich says she changes Ella’s trach tube once a month.
“I literally take her breath away and she understandably gets very nervous about it.”
Denise said her family has a special connection with parents of children with complex medical needs and can appreciate what some of them go through.
“God bless that mom,” she said of Traci.
Ella requires close monitoring around the clock and sees Akron Children’s Hospital specialists in neurology, plastic reconstructive surgery, ear, nose and throat, gastroenterology, pulmonology and primary care.
She has had 7 plastic reconstructive surgeries with Dr. Ananth Murthy, including three last year alone. One of which, in October 2020, involved severe complications.
“We almost lost her. But what an amazing team she had at Children’s. They knew she was in trouble and they all were coming. It was a miracle she didn’t sustain brain damage coming out of that.”
Palliative Care improves quality of life
Palliative care provides specialized medical care for children with serious illnesses, including genetic disorders, cancer, prematurity, neurologic disorders, and heart and lung conditions. The multi-disciplinary team focuses on relieving symptoms, pain and stress of a serious illness and improving quality of life for both the child and family.
“Talking to families, they are amazed and humbled by the support from the Hirschbecks,” said Daniel Phillips, pediatric nurse practitioner. “It helps them feel connected, and also not feel alone in the journey that they are on with their children.”