KANSAS CITY, Mo. — For the Ersery family, each day presents different challenges as they care for 10-year-old Alonna, who suffers from a very rare disease.
“The Mitochondrial Myopathy affects the power source of each one of your cells. Anything that she does, it will take her energy. For her heart to beat, for her eyes to open, for her to try to talk it wipes her energy out,” Janala Ersery, Alonna’s mother, said.
Janala said she began to notice changes in Alonna when she was 11 months old. In 2015, Alonna’s condition took a turn for the worse and has left Alonna needing 24-hour care. However the condition has not only changed Alonna’s life.
“It`s been hard for everyone. Mainly hard for her and her siblings. For them not to have their mother in the same capacity they had me prior to everything and for her as well,” Janala said.
There is a local program aimed at helping lift the weight for families that have someone diagnosed with a serious illness.
“Palliative care, we generally describe as a service to provide additional supports in terms of symptom management as well as psychosocial, emotional, and spiritual support for patients and their families,” Dr. Emily Riegel, Carousel Medical Director, Kansas City Hospice & Palliative Care, said.
Dr. Riegel said more than two dozen people are enrolled in the Carousel Program, offered by Kansas City Hospice and Palliative Care, which is designed to help families and patients not only find quality care but peace of mind.
“There`s nothing like this. This is the most rewarding nursing position I`ve ever had. Not just with long-term care children like Alonna but our terminal kids and the family support that`s needed, the care that`s needed for those kids at that time to make sure their quality of life is desired by the family and the patient,” Cori Jones, a Carousel Team lead, said.
Janala has noticed significant improvement in Alonna’s health and motor skills since enrolling in the program in 2015.
“I never felt comfortable even walking outside and now I will feel comfortable if I was hospitalized and had to leave my home and leave my baby with this team,” she said.
And it’s a team effort that Janala said has given her family a new lease on life that they are forever grateful for.
“I`m so thankful and so excited to see her happiness and her quality of life. Where some people want to see the quantity which is number of years that you can be here but it`s really important to have a quality with that and she`s able to have a quality of life,” Janala said.
The Carousel program relies on donations to provide the care and team needed to help ease the mental and financial burden for participating families. If you’d like to donate or volunteer with the Carousel program visit: https://www.kchospice.org/pediatric-perinatal-care/
