By Liz Verley, Staff Writer
Sophia Rose was born April 26 to Brian and Tami Zilka of Randall. On June 8, “Baby Sophie” was diagnosed with Angelman Syndrome.
According to Tami, Angelman Syndrome is a rare genetic disorder that occurs in one in 15,000 live births, often misdiagnosed as Cerebral Palsy or Autism. Characteristics of Angelman Syndrome are seizures, developmental delay, some kids have limited or no speech and will require lifelong care.
Sophie’s birth weight was 7 pounds, 8 ounces and she seemed fine when she left St. Gabriel’s Hospital.
Tami said, “At home I noticed different things about Sophie and the nights were horrible. At first I just figured it was a normal thing to be fussy. After a couple weeks it became more difficult to get her to relax and calm down. Eating wasn’t enjoyable. She would scream when she swallowed. It was very painful to watch her be so uncomfortable all the time.”
On May 23, Sophie was found blue in her crib. After stimulating her, the color returned to her body and she was taken to St. Gabriel’s Hospital where she was admitted into the intensive care unit (ICU). She weighed only 6 pounds. Realizing they could not provide the care she needed. Sophie was transferred to Children’s Hospital in Minneapolis, May 26.
Arriving at Children’s Hospital, Sophie was sent up to the infant care center (ICC) and the testing began.
“I never imagined that room 1309 would be our home for the next 28 days. There were days we did not know if we would ever be able to bring Sophie back home with us,” said Tami
“The tests started coming back normal and the doctors began crossing off organ function. I had never felt so helpless watching my beautiful baby girl fight for her life. My world was turned upside down because I could not do anything to help Sophia. The swallow study showed that she was aspirating on her food. It as determined that she would need to have a feeding tube surgically placed so we could feed her safely. She still has a G. J. Mickey button, but we do try to bottle feed her too.”
Anything Sophie receives by mouth needs to be thickened with a product called “Thick and Easy” which allows the food to go down more smoothly. During the night she is fed continually by a drip.
Tami said, “Sophie was the youngest child in Minnesota to be diagnosed with Angelman Syndrome. It is a fluke genetic issue. It is caused by the deletion of part of the 15 chromosome.”
It was recommended that the Zilkas get a service animal for Sophie. After researching the issue they found an organization who would work with them, called 4 Paws for Ability. The organization will train Sophie’s service animal to sense a seizure prior to them happening, help with developmental and mobility issues, keep her from wandering off as some autistic children have and provide awareness to the community.
The Zilkas need to raise $13,000 of the projected $45,000 needed to receive an animal trained to meet Sophie’s needs.
Tami said, “What Sophie has is not contagious. We don’t want it to be that people don’t want to be with Sophie. I am more than willing to answer anyone’s questions about Angelman Syndrome. All they have to do is ask.”
On Saturday, Oct. 13, friends and family are holding a benefit for Baby Sophie at the Randall VFW. There will be a spaghetti diner, bake sale, silent auction, handcrafted angel item and “The Power of Cheese” will play from 8 p.m. to midnight. The dinner will be held from 4 p.m. to 7 p.m.
Tami said, “We really thank the community for their support. We know we cannot do it without their support.”
Sophie’s dog will be matched to her based on personality and as soon as the fundraising requirements are met, the chosen animal will go through an extensive training program.
An account has been set up at the State Bank of Randall for anyone who would like to make a donation.