A local family will travel to California this week for a specialized gene-therapy brain surgery that could possibly change the life of their 5-year-old, Jace, forever.
It's no April Fool's joke, rather it is a dream-come-true that Cassandra Verstraete will travel with her son, Jace, and her parents to California on April to prepare for a surgery that could change Jace's life forever. The family lives on a farm near Turon and works in Pratt, Cassandra at Subway, her mom, Janelle, at Dollar General.
"I was pretty nervous about all this but when the doctor that diagnosed the condition Jace has and the one who will be doing his surgery came out to meet us here in Kansas, that changed everything," Verstraete said. "She made me feel so much more at ease and she said, without a doubt, that Jace will take off after getting the gene therapy done."
Jace Baker, Verstraete's soon to be five-year-old son, was born with a rare brain condition called Aromatic L-Amino Acid Decarboxylase Deficiency. AADC is a very rare, genetically-inherited disease, and Jace is one of only 130 people worldwide who have been diagnosed with the disease that makes it difficult for him to function.
When he was four months old Verstraete said he cried constantly and lost all head control.
"I knew something was very wrong and we have been through five years of continuous doctor's appointments and all kinds of testing," she said. "If it wasn't for Dr. Donnenwerth here in Pratt, we never would have made it this far."
Only two children in the United States have ever had the type of brain surgery that Jace will undergo in the next few weeks. Both of them made miraculous recoveries from being invalid to walking, talking and living a more-normal life.
Jace is one of only five children selected in the United States to receive the gene therapy treatment which consists of injecting to chemicals into his brain that he was born without - dopamine and serotonin. Dopamine acts within the brain to help regulate movement and emotion, while serotonin is involved in sleep, depression, memory and other neurological processes. Both chemicals will be pushed by injection straight into Jace's brain.
"I'm hoping that he will be able to have a normal life after this," Verstraete said. "Without a doubt I know this will work."
Verstraete credits the doctors who have worked tirelessly with her to find a solution to Jace's limitations that make him unable to move, feed or dress himself. She is also very thankful to have her son accepted into the trial surgery that could open the door for others like him to be treated in the future.
"The UCSF Children's Hospital in California pays for the surgery and for flying us up there," she said. "They take care of us while we are there and house us in a family room four blocks from the hospital."
Even with the funding coming from UCSF, the Verstraete family will need support in many ways.
A Gofundme account has been set up on Facebook and prayers are welcomed.
"We are just taking this day by day," Verstraete said. "If I didn't believe in God before, I do now."
After the April 1 visit to California to set up the surgery schedule, Verstraete and family members will come back to Kansas, then return to California for three months for Jace's surgery and recovery period.