Siblings excel in school while battling muscle ailment
Originally published August 25, 2016
David and Lisa Schott are Orland Park residents with three children: Alyssa, 18; Madeline 16; and Carter, 14.
Dave is an engineer while Lisa is a teacher in Orland School District 135.
Their first daughter, Alyssa was born in 1997.
In 2000, their daughter, Madeline was born. She appeared to meet all of the milestones, but they noticed she walked with a wiggle; avoided picking things off the floor and used railings when going upstairs.
When she was 3, they mentioned these issues to Madeline’s doctor. He didn’t think it was anything huge but referred them to a neurologist, who ordered several tests, including a muscle biopsy.
The doctors were puzzled by the results — 80% good muscle, 20% bad.
DNA test confirmed that Madeline had Spinal Muscular Atrophy Type 2 (SMA), a form of Muscular Dystrophy, but was ‘a-typical’ in that she had reflexes, and more normal muscle than abnormal.
At the same time, they learned a third child was on the way. Carter was born without any complications.
It wasn’t until he couldn’t walk unassisted at age 18 months that they knew he had a problem.
He was then enrolled in physical therapy. For years, the children have had physical therapy, occupational therapy, aqua-therapy, as well as therapeutic riding.
SMA is a neuromuscular disease that doesn’t allow your brain to work effectively with your muscles. Muscles fail to develop along with the body, which affects walking, lifting, and structural support.
Throughout their journey, other medical issues were addressed.
Madeline required heart surgery to repair a valve. Then, due to lack of torso support, both children started to develop scoliosis. Carter’s scoliosis progressed to over a 60 degree curvature, which began to affect his breathing and organ functions. A full spinal fusion — implanting titanium rods along his spine — provided structural support.
Two years later, Madeline’s curve progressed to over 80 degrees, causing pain both physically and emotionally. She insisted surgery be scheduled after her week at MDA summer camp; known to both kids as ‘The best week of the year!’
The combined costs of these surgeries was close to $500,000. Insurance did not cover the full amount of these vital surgeries.
The Schott’s have always tried to operate like most families — staying active and filling their lives with as many experiences as possible.
“We’ve tried to teach the kids not to let their limitations define them,” Lisa Schott said. “It’s just part of who they are. School has been full of questions because kids are naturally curious. Our kids have always been advocates for themselves, as well as for the other kids like them. Responses to questions have been, ‘That’s the way God made me,’ and ‘I’m just like you. I just do things a little differently.’”
School District 135 has been tremendous in allowing the children to grow academically and determining where they shine. They both have done very well in school making the honor roll and receiving awards for academics.
They also are involved in music.
Madeline has flourished in vocal performance and theater, participating in all of the junior high musicals, and carrying this passion into high school.
She participates in Varsity Choir and Eloquence — both audition-only choirs. She also has made the Carl Sandburg High School musical, as both a freshman and sophomore. She aspires to be a special education teacher, or speech pathologist — both occupations helping children with special needs.
Carter participates in the junior high musicals at Century School, as well as finding his own talents being a member of the band and jazz band, playing percussion. Carter dreams of being an engineer, and is pursuing that dream by being involved in both IMSA (Math & Science club), and Tech Club.
Both children enjoy community service. They love to give back and help others, and have participated in MDA events, holding the honor of Top Total Hop-a-thon Event in the Nation — raising more than $19,000 with Center School. They volunteer at an animal shelter, senior living facility and at community events.
Madeline’s goal is to earn a sheriff’s award by accumulating 100 community service hours — and she’s almost there.
“As the children grew the challenges began,” Lisa Schott said. “They needed wheelchairs for mobility, which required modifications to our home. We needed to purchase a full-size wheelchair van to accommodate the entire family. Much of the mobility equipment is not covered by insurance because they are deemed ‘items of convenience’ and ‘not medically necessary.’
“We’ve always tried to accommodate our children’s needs ourselves, but with the challenges we’ve endured, we’re finding it difficult to accommodate their needs for transportation. Our current van cannot accommodate two power wheelchairs. We need a vehicle that can transport the kids so they may participate in all of the activities, and keep their dreams alive.”
Recently, Lisa Schott informed me that the family was on their way to Ohio State University to transport their oldest daughter, Alyssa to college. On their way home, their current van was badly damaged in an accident, and is not able to be driven, so they are now in dire need of a new vehicle.
A fundraising page has been set up to help raise funds: https://www.youcaring.com/madeline-and-carter-schott-614452