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 attends school and receives physical, speech, and occupational therapy. His therapies
are tiring, but very helpful in improving his communication and mobility. His main mode of
transportation is his wheelchair, but he currently can crawl and walk 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. Austin loves making phones call and video calling
people. Music makes Austin so happy, and he loves to dance – especially to You Keep A Knockin’
by Little Richard and La Bamba by Ritchie Valens. 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.

Austin has had to, and continues to, overcome many challenges in his short life. While he can
do so with a smile, we wish we could take the struggle away and let him be a “normal” ten-year-
old: 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! Creating a gene
therapy for this disease to help Austin, and everyone else, with ML4 have a better life comes
with an enormous price tag. Without financial support from people like you, it isn’t possible. So
please, if you can, give any amount: big or small and help find treatment and a cure for this ugly
disease.

***************************************
ABOUT THE ML4 FOUNDATION

ML4 is a genetic disease caused by the mutation of a single gene that results in the loss of a protein (MCLN1). This incredibly important protein is required by the body for normal functioning: without MCLN1, children and adults with ML4 suffer from progressive and debilitating loss of gross and small motor function, go blind, develop problems chewing and swallowing, rarely have the ability to speak, cannot walk, and over time, lose many abilities that they work hard to acquire when they are young.

The funds raised by the ML4 Foundation are directed to a research program at Massachusetts General Hospital in Boston. We have been working for several years with a team there to create a gene therapy to treat ML4. We are also funding a large-scale natural history study of ML4, bringing ML4 patients from around the world to the MGH clinic to be seen by specialists in this disease. YOUR DONATIONS made this work possible and allow it to continue at a speedy pace!

If you prefer to donate by check, you may mail it to the following address, and note that it is given in honor of Austin Rousse.

Mucolipidosis IV Foundation
1440 Spring Street NW
Atlanta, Georgia 30309

The ML4 Foundation is a U.S. 501 (c)(3) nonprofit charitable organization.
Tax ID 13-3633501