The Rousse Family

We are Angela and Louis Rousse, and we live in Michigan with our children Austin (born in 2012)  and Emma (born in 2016). When you are around our son Austin, you are likely to be smiling. He has an amazing personality – full of fun and mischief!

Austin has been a fighter from a very young age. When a cardiologist discovered that Austin was in heart failure at the age of one month, he was given medications to keep his heart beating. Through nothing short of a miracle, a very large hole in his heart healed slowly over time without requiring surgery. We knew throughout Austin’s infancy that he was behind most children his age in almost all aspects of development.  We were told repeatedly that the delays were due to his heart issues, and that he would catch up.  However, when he still wasn’t walking at two years old, we took him to a neurologist and demanded an MRI. The MRI revealed multiple issues that pointed to a possible genetic cause.  He was referred to the University of Michigan’s Pediatric Genetics Clinic, where months after testing he was given a diagnosis of ML4.

Austin started kindergarten in 2018, and he receives physical, speech, and occupational therapy. His therapies are tiring, but very helpful in improving his communication and mobility. His main mode of transportation currently is crawling, but he also walks in a gait trainer or holding onto our hands. Austin has created his own hand signs for many of the things he loves to do and uses those signs to communicate. One activity he enjoys is pushing buttons on hand-me-down cell phones to pretend to call people. Music makes Austin so happy, and he loves to dance – especially to The Wheels on the Bus and The Itsy Bitsy Spider. One of his many nicknames is “Tricky-Trickster” because he is always trying to get people to laugh by playing tricks on them. His absolute favorite thing to do is swim!  He asks to go swimming just about every day, and likes to get in his raft, kick his legs, and swim around the lazy river at the local YMCA.

Because Austin is unable to take care of himself, he requires attention almost the entire time he is awake. Transporting him is becoming more challenging as he gets older and heavier, especially in our two-story home with upstairs bedrooms. We are sad that Austin’s days as his mom’s number one “shopping buddy” may be near an end. He is now too big for Angela to lift into a cart, and having to maneuver both a wheelchair and shopping cart is difficult.

The ML4 Foundation gives us hope.  They surround us with other families and information so that we don’t feel alone in this struggle.  They work tirelessly to find treatments and because of them, the future doesn’t seem so bleak.  We have made it our mission to raise money and awareness so that Austin may one day walk and talk with his little sister!