Emma Michael is 3 and she likes going to WellSpan York Hospital’s pediatric unit, where she is undergoing immunotherapy infusions as a treatment for a rare neurological disorder. This involves a needle stick, an intravenous bag, and often an entire day in the hospital, but she is a happy girl when she is in the unit.
“She thinks she is the head of her own parade there, I swear,” says her mother, Destiney. “There is a wagon, which you can attach to her IV pump to, and she loves to sit in that and be carted in a circle around the unit. The nurses wave and say hi. There is a lot of attention on her.”
Emma, the daughter of Destiney and Jaison Michael of York, started exhibiting alarming symptoms in late 2020, including irregular eye movements, stumbling, tremors in her upper body, and sleep problems. Emma’s parents took her to be checked and ended up in the care of WellSpan pediatric neurologist Dr. Jena Khera, who diagnosed the toddler with opsoclonus-myoclonus-ataxia syndrome, a rare nervous system disorder.
The disorder can be caused by a tumor or a virus. Emma does not have a tumor, so doctors believe a virus – possibly even COVID-19, which she tested positive for at the time of her diagnosis – was the cause. Khera prescribed immunoglobulin transfusions, which can range from six to 12 hours, to treat the syndrome.
Khera and her colleagues at WellSpan Pediatric Neurology also offer treatment for childhood headaches, migraines, epilepsy, movement disorders, brain injury, and other neurological conditions.
Emma is doing well, and her symptoms have lessened. The hope is that she will go into remission.
“She has been much improved,” her mom said. “She will continue to receive treatments as needed. We have just been really impressed with the way we have been treated on the unit and the level of care Emma has gotten.”
In fact, Emma’s family is so grateful for both the compassionate and the state-of-the-art treatment their daughter has received that they recently held a toy drive to mark Emma’s third birthday and benefit the pediatric unit at WellSpan York Hospital. After they put the word out to family and friends, dolls, Lego sets, Playdoh, craft sets, Xbox games and other toys came pouring in, enough to fill the back of a pickup truck – about 260 toys in all.
“Emma said, ‘Oh! The hospital kids are going to be so excited,’ “ her mom said. “She understood this is to give back to other kids.”
Aimee Friedrich, pediatric nurse manager at WellSpan York Hospital, said the nine-bed unit gives a toy to every child who is admitted, and also after a difficult procedure or a treatment goal has been met.
“The patients have loved the toys,” she said. “It might sound unusual, but a lot of children have fun here, which is what we are aiming for. A child who does not feel well is stressed physically and mentally, potentially delaying the healing process. We want them to be as comfortable as they can.
“It was so caring for the Michaels to think about how they could give back to other kids. We were overwhelmed by the response from the community. We are very grateful.”
For more information on WellSpan pediatric care, including specialty care for children, go here.