Waynesboro family working to raise money for others affected by infantile spasm diagnosis
WAYNESBORO, Va. (WVIR) - The University of Virginia Medical Center is teaming up with a Waynesboro family to help others going through a devastating diagnosis a bit easier.
The Henke family had its life turned upside down after a shocking diagnosis for their now-7th-month-old son, Max. Now they’re working hard to help other families avoid the financial hardship that an infantile spasms diagnosis can cause.
“Watching your child go through seizures and hearing that you may not be able to have the expenses covered that can save your child’s life...that was the worst day of my life,” Tracy Henke, Max’s mom, said.
Henke says she first noticed her son making some unusual facial expressions. He was a happy baby, but seemed to be frowning a lot.
“We ended up seeing him having more and more what looked like involuntary spasms,” Henke said. “It turned out after an EEG and an MRI that he has a condition called infantile spasms, which is a very rare condition.”
“They typically look like quick one-to-two second, stiff, jerking movements of the body,” Doctor James Nicholas Brenton with UVA Pediatric Neurology said. “They typically occur in clusters around the times of falling asleep or when they wake up from sleep.”
Dr. Brenton is one of the pediatric neurologists treating Max, who has been in and out of the hospital for nearly two months.
“I put up a post on Reddit the night I found out about it to basically just yell into the blackness and see what happens,” Justin Henke, Max’s father, said.
What happened was an outpouring of support from families fighting the same expensive battle.
Then came the treatment options, with the gold standard coming in at $40,000 for each bottle of injectable medicine. Max’s parents says a baby his size would need five bottles.
“The steroid treatments can cause irritability and weight gain and poor sleep, and so for new parents, or a parent, with an infant who has this it can be quite challenging,” Brenton said.
Max has so far reacted well to the treatments, and is back at home.
“We were extremely lucky,” Tracy Henke said. “I looked around at all those families on the seventh floor and I told the doctors they had gone so far above and beyond for us I want to pay it back, and I told them, I said no matter what I will find a way to pay this back.”
There are two GoFundMe campaigns: one to help Max, and the other to help others afford infantile spasm treatment.
UVA created a fund in Max’s name, Miracle Maxim Fund, to help families by removing barriers like rent, to paying hospital bills.
“We’re asking the community to help us to raise money for those things so that no family ever has to go through. Am I going to lose my home or am I going to save my child’s life? We don’t want anyone to ever go through that ever again,” Tracy Henke said.
The Henke family said that more people than they could possibly name stepped up to help them out, including: UVA Augusta Pediatrics, UVA Children’s Hospital, UVA’s Pediatric Neurology, First Baptist Waynesboro, Waynesboro 7am Rotary, Eliana’s Light, Yappy Campers, Waynesboro Family YMCA, Cambridge Learning Center, Steve Shippy with Haunted Saginaw, Audrey Tom with Putting Me Together, and Nelson Community Wellness Alliance.
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