Featured Alumna - February 2019

After graduating from Chicago Christian High School in 2001, I attended DePaul University for a Bachelor’s Degree in Music. I then moved to New York City to attend Manhattan School of Music for my Master’s Degree. However, my ultimate goal was to be accepted to The Juilliard School and starting a career in singing. This came to fruition when I received an invitation to The Juilliard Opera Center. Upon completing Juilliard Opera Center, I immediately began performing in Lincoln Center with New York City Opera, the New York Philharmonic, Seattle Opera, Philadelphia Orchestra and throughout Germany. Since the plans for my professional life were in place, my husband and I decided to start a family. Our son, Michael, was born in 2012. Mikey and I spent the summer of 2013 in Seattle, as I had a contract to sing in Wagner’s Ring Cycle. In 2015, we welcomed our second son, Benjamin, into our lives. This is where my plans began to fade, and God’s plans came into focus.

Ben began to miss his milestones. He couldn’t chew, swallow, sit up, walk, or talk. I immediately paused my career to begin to care for his endless needs. I took him to therapy 21 times a week: Physical, Occupational, Feeding, Speech, Vision, and Special Play Therapy. Ben was initially misdiagnosed with Cerebral Palsy, and it wasn’t until a pediatrician/friend of mine told me to go down the road of genetics that we finally found the correct diagnosis.

Salla Disease: An extraordinarily rare disease that effects the nervous system. There are only a handful of known cases in the United States, 130 worldwide. Ben’s precious body is unable to recycle Sialic Acids, and these acids are literally poisoning him slowly. Over time, he will deteriorate and begin to have seizures that will ultimately take his life. The severity of this diagnosis left us devastated. This devastation was only amplified when we began to research Salla disease for ourselves and found that nothing existed. There was no research, family networks, treatment options, etc. There wasn’t even a website for the disease! It was listed as “Other” on the chart of Orphan Diseases. My husband and I felt defeated and truly alone in our diagnosis.

“For I know the plans I have for you, “declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11 

Through the diagnosis, it was hard to see God’s plans. We slowly began to realize that He is in charge, and it was up to me to understand why God was giving us this trial. Little did I know that all of my experiences would transform my life, and the life of other families, for something good. Suddenly my “stage” was no longer for performing, rather, it was to be used as a platform to bring awareness and hope to others who are suffering from Salla Disease.

Perhaps to best illustrate the perfection of God’s plans; just prior to Ben’s diagnosis, Montefiore Children’s Hospital and Einstein University’s Rose F. Kennedy Center in New York City started a new “IDD Gene Team”. This program connects scientists to rare orphan diseases. Ben was the first patient to be considered for this program! Because of my musical background and my connections to the performing world, the doctors encouraged me to start a foundation for Salla!

At first, I felt overwhelmed by the enormous undertaking of starting a foundation. But it was then that I realized what God had in mind for me all along. After much contemplation and prayer, my husband and I decided to go forward in starting a rare disease foundation. We named it “S.T.A.R” Salla Treatment And Research. Since we began this journey in April of 2018, we have amassed a team of scientists who represent The Mayo Clinic, University of Paris, National Institute of Health, Montefiore Children’s Hospital, Einstein University, Berkeley, Stanford and Yale. In September, we arranged for these esteemed doctors and families affected by Salla Disease to convene just outside of New York City for an unprecedented “Think Tank/Family Camp” event. Families came from Sweden, Switzerland, South Dakota, Georgia, and Texas.

While the doctors met, families participated in therapy sessions that they might not otherwise have had access to in their corner of the world. An immediate bond between families and doctors was made, and the National Institute of Health graciously opened their doors to provide resources for the study of Salla Disease. As a foundation, we agreed to fund a postdoctoral student to work under the direction of this NIH’s lead genetic scientist, Dr. William Gahl, for 3 years.

Our fundraising efforts have now begun and will continue until our financial goal of $300,000 is reached. God knew what He was doing in giving me an amazing opportunity to sing and build relationships in the performing world. These friends are now offering their talents to hold concert events in the New York City area to help us raise our needed research funds.

“As each one has received a special gift, employ it in serving one another as good stewards of the manifold grace of God.” – Peter 4:10

Although my life isn’t what I had planned, I know that I’m living God’s plan. I am thankful to Chicago Christian High School for instilling in me the steadfast gift of knowing how to focus on God’s grace in all situations. This spiritual foundation has held me up as I pioneer this journey of rare disease. I am every thankful for the priceless gift of Christian Education that I can now bring to a bigger platform here in New York City and globally. Visit www.sallaresearch.org to learn more.