Fundraisers to benefit Yorkville child with Spinal Muscular Atrophy
By Megan Maginity mmaginity@stmedianetwork.com June 4, 2012 6:50PM
Janny Tercs of Yorkville was diagonsed with Spinal Muscular Atrophy, a motour neuron disease, in December 2011. Upcoming fundraisers will support SMA research and Terc's Rifton Dynamic Standers wheelchair.
At A Glance
The Yorkville High School’s first SMA Charity Garage Sale is from 9 a.m. to 2 p.m. Thursday, June 7, and from 9 a.m. to 5 p.m. Friday, June 8.
Jimmy John’s in Yorkville on June 9 will donate proceeds from sales when patrons mention “Janny’s SMA Fundraiser.”
Updated: July 7, 2012 8:03AM
After months of doctor appointments and unanswered health questions about her 20-month-old son Janny, Aimee Tercs of Yorkville got a call Dec. 23, 2011, that would change her family’s life forever.
“Our biggest fear was realized; my baby has SMA,” Tercs said.
Spinal muscular atrophy, a motor neuron disease caused by mutations in genetic material, affects Janny’s whole body. Motor neurons affect voluntary muscles, which are used for crawling, walking, swallowing, and head and neck control. One in 15,000 to 20,000 babies are affected.
Tercs, a psychology teacher at Yorkville High School, first noticed her son’s lack of gross motor skill development when he was about 14 months old.
“He stopped trying to walk,” she said. “When most kids are just beginning to cruise around or walk, Janny’s skills declined. I felt the nagging tug of my ‘something’s not right’ radar.”
“Janny was still happy, playing and having fun,” she added.
During the months of June and July, Janny was brought to three different doctors, a total of five times. Theories and prescriptions were given and later a physical therapist recommendation.
However, there was no change in Janny’s capabilities.
“I then contacted a pediatric neurologist, because there was definitely something that needed to be researched on a neurological level,” she said.
According to Dr. Gaurav Yadava, a pediatric neurologist, Janny was diagnosed with Type 2 SMA, which was determined by his ability to sit unsupported and his difficulty with walking. There are four types; however, a patient does not progress to another type.
“Janny has a wonderful family,” Yadava said. “They brought him into my office after seeing the delay in development, muscle tone and gross motor skills. I diagnosed him after a genetic blood test that confirmed he had SMA. I also tested Janny with a nerve conduction test, which tested the impulses in his nerves.”
Yadava recommends people diagnosed with SMA have regular support management by a physical therapist, occupational therapist, dietitian, pulmonologist, orthopedist and a neurologist.
Days after he was diagnosed, Tercs reached out to Families of SMA, a charity that supports research for SMA, offers family support and fundraising.
“It was really hard to find out about Janny’s condition, and they have helped out a lot,” Tercs said. “They have even sponsored Janny and I to go to a SMA conference in June to become more aware. My son can network with more little kids like him.”
Janny works with clinical teams and attends weekly therapy.
“We are trying to get him a standing wheelchair that is weight-bearing,” Tercs said. “It will keep him more social and on the height level of children his age. But unfortunately, our insurance will not cover it.”
That’s why fundraising will be valuable. Yorkville High School is hosting its first SMA Charity Garage Sale on June 7 and 8. And Jimmy John’s in Yorkville will donate proceeds from orders on June 9.
Proceeds from both events will help the family buy a Rifton Dynamic Stander for Janny.
