Miracle Monday: Mother climbs mountain to honor sons

It’s Miracle Monday, and today we meet a mom who would climb the highest mountain for her miracle sons.

Standing on a summit more than 14,000 feet high gives you a unique perspective. Walking a mile in Beth Fugere’s shoes would give you the kind of perspective most of us could never imagine.

Her 12-year-old son Blake and 7-year-old son Brett have a rare genetic disease called Batten CLN6, and it is terminal. Life expectancy is about 7 or 8 years old.

Blake was 5 and a half years old when doctors diagnosed him. He started to lose his vision and fall. Brett was 9 months old when his parents had him genetically tested. That’s when they learned he too would face the same fate.

Beth said her boys are two of only 28 children in the world with this disease, and they both received experimental gene therapy to, hopefully, extend their lives.

COVID-19 threatened that second chance for Brett last year when complications from the virus sent him into septic shock. He spent 90 days in the ICU. Doctors performed seven surgeries, and Beth was starting to come to terms with losing Brett.

“There was a moment of turn where, instead of it being so negative and where he would potentially pass, he was actually healing, and that was the turning point in the whole ICU experience,” Beth said.

Beth recently completed her fourth mountain climb, a way to honor her sons.

“When you stand against a 14,000-foot masterpiece that only God can produce, you’re humbled very quickly at how small you are. When you’re climbing, you realize just how much impact we all have and the opportunities to make large impacts on everything,” Beth said.

The impact she hopes to make is to help other families with children in the pediatric intensive care unit at Golisano Children’s Hospital through her foundation, The Nautilus Note.

She’s also planning her fifth climb with the goal of finding the equipment to bring her boys to the top with her.

Beth said the saying that communication is 80% non-verbal is 100% true. She has her own way of communicating with her sons, and though they require around-the-clock care, they are in public school, and she said it’s going great.

Click here for more info about the Nautilus Note Lee Health Foundation and see how you can donate.