Aacen's family needs our help!

Aacen is a fighter who has faced challenge after challenge since birth. He 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, sensory processing difficulty, strabismus, chronic constipation, spasticity, to name a few.

2022 came with another challenge many UNC80 kids face … seizures. It’s been a long several months of seizures appearing when you least expect it, causing him to miss weeks of school and summer school, trying different medications, adjusting doses, and administering rescue meds when the seizures are out of control. The family has taken him to the hospital several times for more severe seizures, and in May, Aacen’s medical team decided it was best to have him flown to Mayo in Rochester for closer monitoring and evaluation.

Ace continues to battle the seizures, and the sheer exhaustion from seizures and meds have caused him to regress in many areas, ie. Walking, communicating, eating.

Ace was recently at Mayo for further evaluation, and to consider other treatments such as different medications, as well as a vagus nerve stimulator.

This has all taken an emotional and financial toll on the Huck family. It’s been a difficult couple of 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 Grand Forks and Mayo to work with the specialists and find solutions to help Ace thrive.

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 “snuddle,”(snuggle/cuddle)!