Huck Family Medical and Living Expenses

Aacen, "Ace," is a spirited 8-year-old boy who has faced challenge after challenge since birth. The biggest battle he faces now is a corpus callosotomy scheduled for March 5. This surgery is meant to stop, or greatly reduce his seizures. In this surgery, the doctor cuts the band of fibers, the corpus callosum, that connects the two halves of the brain. This limits the spread of the seizures by preventing them from passing between the two sides of the brain.

It was a long road getting to this point. Ace was born with an incredibly rare genetic disorder called UNC80 deficiency, which causes developmental delay, the inability to speak, g-tube feedings, low muscle tone, central sleep apnea, epilepsy, sensory processing difficulty, strabismus, chronic constipation, spasticity, to name a few.

In 2022, Ace started having seizures. He was and continues to have several types of seizures, including tonic and absence seizures, but most often atonic, also called drop seizures, which cause a sudden loss of muscle strength, causing him to collapse. The seizures have drastically reduced Ace's quality of life. He is no longer able to use his gait trainer to walk and he rarely butt-scoots around because it can be dangerous when he collapses from drop seizures, which happen on average 10 times an hour. On bad days, he struggles to even hold a toy or book, because he continually drops it with the drop seizures.

Ace then received another diagnosis, Lennox Gastaut Syndrome (LGS), which is a rare type of epilepsy with multiple different types of seizures. We have tried many, many antiseizure medications, with little to no improvement. His LGS has proven to be medication resistant. After many trips to Mayo in Rochester, MN, most scheduled, some emergency, and discussions with the neuro team, we decided that in order to give Ace a fighting chance at beating these seizures, he would undergo the corpus callosotomy.

This has all taken an emotional and financial toll on the Huck family. It’s been a difficult few years for so many families, but if you’re able, any amount will help to ease the burden as they continue to navigate these murky waters, traveling to Mayo for Ace's surgery, follow-up and many other future appointments.

We are confident the good Lord will help Ace return to the boisterous, energetic little boy he is day in, and day out! No matter how he is doing though, he always loves a good snuggle!