Reed Havlik is a happy 4-year-old who loves swimming, playing in his sandbox, and giving his parents, Erika and Jesse, hugs and kisses.
In a short amount of time, Reed already has taught those around him the importance of appreciating all of life’s moments.
In November 2014, Reed woke from a nap and was unable to bear weight on his right leg.
“He was normal developing up until that point,” says his mother, Erika. “He hit all of his milestones.”
Thinking he may have a broken bone, local urgent care doctors put a temporary cast on Reed’s leg.
“They said he should be able to walk in a couple of weeks, and he never was able to walk again,” says his father, Jesse.
Reed underwent several scans and tests to determine the cause of his leg issues, but all came back inconclusive. The Havliks were soon referred to University of Iowa Stead Family Children’s Hospital to meet with pediatric neurologists and find answers.
In February 2015, Reed was diagnosed with an extremely rare genetic condition called leukodystrophy, or vanishing white matter disease. It is a condition that causes the white matter in the brain to disappear. As the disease progresses, Reed will lose the ability to walk, use his hands, eat, hear, speak, and see.
The news was devastating to Reed’s parents.
“As they (the doctors) described it, each piece they said got worse and worse,” remembers Jesse. “By the end of the conversation, it finally hits you that he’s going to die.”
“Your world rips out from under you,” adds Erika. “We’re told we probably shouldn’t have any more children because of the odds of having another child with the same disease.”
Through genetic testing, Reed’s doctors were able to determine the exact gene mutation responsible for his disease. He is one of fewer than just 200 patients worldwide with vanishing white matter disease.
“There’s no cure, so research is all we have,” says Jesse. “Basically, it’s self-funded by families because there isn’t enough money to go around, due to the fact that it is such a rare disease.”
“What’s going on with the research is all we have to really hope to save Reed’s life,” adds Erika.
Reed’s care team, including pediatric neurologist Seth Perlman, MD, has been there to support the Havliks since their son’s diagnosis.
“Dr. Perlman’s team is so great,” says Erika. “They listen to everything we have to ask, and they take the time to explain everything to us. We feel very loved.”
Today, Erika and Jesse focus on enjoying each day with Reed and giving him as many unforgettable experiences as possible.
“Reed’s diagnosis has taught us to appreciate the moment, to be a family…and make sure we spend as much time together as we can, because we don’t know what tomorrow is going to bring with this disease,” says Erika. “We just have to keep Reed happy and moving forward, getting the help he needs and the therapies he needs so he can live as normal as he can for as long as he can.”