Fundraiser planned to help 2-year-old's family
By DAWNE LEIKER
Two rare diseases at work in 2-year old Liam Edwards have made great demands on his small body and generated countless concerns for his parents.
"You worry about what's going to happen in the future," said Liam's mom, Ashley Edwards. "For now, we just take it for today."
Liam, "a little fighter," according to his mom, was diagnosed in September with Opsoclonus Myoclonus Syndrome, a rare autoimmune disorder that can cause uncontrollable shaking, eye spasms and the inability to walk or talk.
He has undergone treatment for the disease with multiple medications since his diagnosis.
Without proper treatment, OMS, which affects only one in 10 million people, can lead to severe behavioral problems and learning disabilities. The disease has no cure; however, several treatments, including chemotherapy, are used in an attempt to induce a neurological remission.
While undergoing his second intravenous immunoglobulin therapy in November, Liam's blood pressure dropped, leading doctors to discover he had low hemoglobin levels.
"He was very lethargic," Ashley Edwards said. "He didn't really respond too much.
"He just kind of laid in your arms and looked up at the ceiling."
After an endoscope procedure to find what was causing the issue, doctors found esophageal varices, which are abnormally dilated veins of the esophagus.
An ultrasound and MRI of Liam's liver in November led to the discovery that, in addition to OMS, he suffered from Caroli's Syndrome, a rare disease of the liver. The odds of having both syndromes is extremely rare.
Efforts to help defray some of Liam's medical expenses have been undertaken by nursing students of North Central Kansas Technical College. Both of Liam's parents, Ashley and Ian Edwards, are NCKTC nursing students.
A fundraiser will be from 9 p.m. to midnight Saturday at Sip N Spin, 209 W. 10th. The band DOC will play during the event, with proceeds from the cover charge going toward Liam's medical expenses. Because OMS is a rare disorder, the U.S. Food and Drug Administration has not approved treatments. Therefore, many of his treatments are not covered by insurance.
"When we found out how much that medication is, we decided they were going to need more than just the couple hundred dollars we could scrounge up as a class," said NCKTC nursing student Misty Bland. "I know that Ashley and Ian, if it was my kid or anybody elses' child in class, would do the exact same thing."
In addition, nursing students pitched in to scan class notes for Ashley and Ian Edwards in an attempt to help them stay caught up on their classes while Liam's medical needs kept them away from school. Future fundraising events also are in the works.
Liam continues to receive adrenocorticotropic hormone and IVIG for his OMS, medications that are hoped to put the syndrome into remission. His treatments also include water pills for his liver and medication for stomach ulcers.
"Now that he's on all these medications, he's starting to act like a little kid again," Ashley Edwards said. "Starting to play.
"He actually, just the other day, took his first couple of steps by himself."
Despite Liam's medical trials, Ashley Edwards said her family has been fortunate.
"We have very awesome support systems from the hospital, from our school, our families," she said. "Everybody's been really willing to help us.
"We're very, very thankful and lucky."
Contributions toward Liam's medical expenses can be made to a fund under the names of Ian and Ashley Edwards at Emprise Bank, 1200 Main.