WASHINGTON TWP, Mich. (FOX 2) - Stacy Lotterman has been moving mountains for her 4-year-old son Holden since the day he was born, but now she's going through what no mom should ever have to.
"Very difficult to take care of. He requires one-on-one care all the time," she said.
Holden has several struggles, including mitochondrial disease and epilepsy. He's slowly declining, and his family doesn't know how much longer he will live. To get through their new normal, Lotterman, along with 30 other families, have been relying on a pediatric home hospice program -- the Palliative Team and Children's Hospice, or PATCH.
"When we finally entered into the PATCH program, life got amazingly better. We had the help we didn't have. They have a chaplain who helps us with our spiritual needs and our faith, and our nurse has been a God-send," Lotterman said.
"We provide all their medications, their supplies, their diapers, their formulas -- anything that they need, we manage their total care," Holden's nurse, Tina Spegon, said.
But this program that has done so much for so many is at risk of closing. NAME says it's owned by both Beaumont and Alternate Solutions Health Network, based in Kettering, Ohio.
"It's heartbreaking and it makes me really scared to know that some of our children are going to be without any services," Spegon said.
Lotterman says if the program ends, families like hers will be scrambling. Now she's pleading for the PATCH program to stay.
"Before the PATCH program came along, it did feel like we were falling through the cracks because no one could help us to the extent that we needed and if we lose them, it will be like being abandoned again," she said.
Alternate Solutions Health Network issued the following statement:
"We deeply care about our patients and families.
In July 2019 we made the difficult decision to stop admitting new pediatric hospice patients. Since then we have transitioned new pediatric hospice patients to other providers and we have been searching for a partner with the expertise to care for our existing patients.
We will continue providing care to our patients throughout the transition, which does not need to be completed by a certain date. We will work with our patients until we identify another organization that can provide care."