Felix Neptune Brunelle is currently five years old. Typing that sentence now feels like a miracle.
I’m Tim, Felix’s father.
(That's Felix with his Mama, Haley and brothers Eli and Maks.)
Felix was born premature at 4 pounds 2 ounces, with a laundry list of complications: an extremely rare deletion of 46 genes “of unknown significance” on the Q arm of Chromosome 10, Arthrogryposis (which impacts nearly all his joints—especially his hips, legs, elbows, fingers and jaw), bilateral hearing loss, partially missing clavicle, a heart condition, vertical talus (rocker-bottom feet), low muscle tone all over his body—especially his peristaltic (i.e. swallowing) muscles, as well as many tight muscles in his hips, arms and legs.
We were so fortunate to live near Minneapolis Children’s Hospital. Those nurses, doctors and specialists kept Felix alive and helped all of us learn to thrive despite the rare circumstance. After roughly three months in the NICU, Felix had surgery to install a G-Tube to facilitate feeding and finally went home.
Since then, Felix has had many adventures. Six months after being born he had a second surgery to repair a hernia and a third not long after to convert the G to a G-J Tube (Felix has had eight sedated procedures in just 5 short years of life.) He got fitted for hearing aids, ankle foot orthotics (AFOs) and a garage full of adaptive equipment to continue to help him access his world. He got his first, then second, then third wheelchairs.
Today Felix remains on a feeding tube. He uses his manual wheelchair to get around in his Kindergarten classroom and a power wheelchair to zoom around the parks and lakes in Minnesota. He continues to visit several different specialists and therapists to keep him on track. Felix has an iPad “talker” (AAC device) to help him talk, spell, do arithmetic and even tell jokes. He sings (very quietly!) in the children's choir at church. In short, Felix is resilient—a light in our lives and our community. We are constantly learning so much by his example.
But the one obstacle Felix can’t overcome, and likely never will, are stairs.
Felix’s independence is based on his wheelchairs (he currently uses a manual and electric chair, depending on the situation). And as Felix grows—he’s currently 35 pounds—it becomes harder and harder to keep him safe while carrying him up and down the stairs.
Felix Neptune needs an elevator.
Our family lives in a house built in 1941. There are two flights of narrow stairs from the basement to Mom and Dad’s and Felix’s bedrooms and the accessible bathroom on the second floor. We’ve had assessors from Minnesota state and Hennepin county (along with their licensed contractors) examine the structure. Their recommendation points to building an elevator shaft on the exterior of the house, with three points of entry (basement, first floor and second floor).
Having an elevator will provide Felix with increased independence to move around our house as he likes and needs for years to come—in either one of his two wheelchairs, and it will help keep Felix and his caregivers safe as he and they move from floor to floor.
Unfortunately, elevators are expensive!
While our family will cover a significant portion of the cost, we are already 18 months into the arduous process of appealing our case to Hennepin County and Minnesota state for additional funding. Those sources are still not nearly enough to complete the project (the most recent estimate was $251,000.)
So we are starting this GoFundMe to help supplement the funding we will receive from Hennepin County and Minnesota Department of Health and Human Services to build an elevator for Felix. Your generosity will enable us to secure the contractor approved by the state, and complete construction. We are hoping to raise all the funds and begin the project by Fall of 2023, depending on construction team availability.
Thank you in advance for any contribution you can make to help Felix rise.
The Brunelle Family