Family seeks help to save baby’s life

By Chris Day
cday@thenewsstar.com In the early months of their newborns’ lives, most parents are setting milestones.They are waiting for their baby to take first steps, grow teeth and say first words.Instead, Valery and Corey Williams of West Monroe are fundraising. Their 5-month-old son Aidan has a rare bone disease called infantile osteopetrosis. And it is fatal without treatment. Their faces Wednesday showed the roller-coaster ride of emotions they have been on the past three months.There is no absolute cure for osteopetrosis. It is a rare inherited disease in which bones become denser than they should be.Healthy bone growth is a balance between cells that create bone tissue and cells that destroy bone tissue. But for children like Aidan, the cells that destroy bone tissue do not function properly.So what appears on X-rays to be strong, thick white bones are actually weak bones that fracture more easily.“He had small fractures in his ribs, and his bones were a bit denser than normal,” Valery said, which they discovered at the Arkansas Children’s Hospital in July. “They contacted a geneticist and said they hadn’t seen a case like this.”According to St. Jude’s Research Hospital in Memphis, one in at least 200,000 children is affected by thedisease. In the United States, approximately 20 children are born with the disease each year.Aidan was born March 10 at St. Francis Medical Center. Valery and Corey thought they had a regular, healthy baby boy on their hands.“He’s very alert. The only time he ever cries is when he’s hungry,” Corey said, sitting on his mother’s couch beside his wife.As they described Aidan’s condition, the baby’s big blue eyes stared directly into the eyes of his grandmother Bobbie.“He goes where his grandmother goes,” Bobbie said as she prepared to give him his bottle.Just after Aidan turned 3 months old, Corey and Valery noticed a soft spot swelling up on Aidan’s head. Corey, an X-ray technician, thought his child might have hydrocephalus, a condition in which there is an excessive accumulation of brain fluid.But further testing showed Aidan was producing immature blood cells, which caused them to believe he had cancer.This factor took them to the Arkansas Children’s Hospital in Little Rock where a team of hematologists — physicians who specialize in blood diseases — finally found the problem.“The ER physician was the one who broke the news to us,” Corey said. “She told us he had a very rare bone disorder. The best thing she told us was that it could be cured.”The Williams discovered that Aidan lacked the enzyme in his body responsible for those cells that break down bone. But a successful bone marrow transplant could give Aidan that vital enzyme.About 30 percent of children with osteopetrosis have to repeat the bone marrow transplant because of limited bone marrow space, the Williams said.“So it’s kind of risky to do it,” Corey said. “Looking at it, there’s a 70/30 chance he’ll live or die.”That risk was too much for the Williams.It pointed them toward an osteopetrosis specialist at the University of Minnesota Medical School in Minneapolis, where a new procedure for this particular disease is showing positive results.The new procedure does not require such aggressive levels of chemotherapy to destroy the old bone marrow, while the stem cells in the new bone marrow successfully produce the right balance of blood cells.Aidan is expected to undergo the procedure Sept. 27. Because the family must stay in Minneapolis four months after the procedure, Corey will work part-time in a hospital there to begin paying for it.Despite the constant worrying and frustration, Valery and Corey are optimistic.“We keep thinking, ‘Maybe we can wait. He looks fine.’ But we know he’s not,” Valery said.Their health insurance provider will cover $500,000 of the $820,000 procedure. Valery’s mother took out a loan on her West Monroe house and is withdrawing a certificate of deposit to help with the remainder.Local attorney Paul Hurd established at no charge a trust fund in which anyone can donate to and help alleviate the Williams’ heavy cost burden.Hurd said everyone contributing a little bit can help Aidan go a long way.“If people want to help, the first thing they can do is pray. That’s all we ask of anyone,” Corey said. “But they can donate if they want.”