Alone. That’s how Jessica Klein-Foglio felt after she discovered her second son was diagnosed with Salla disease.
With fewer than 10 reported cases in the United States — and barely 130 more around the world — Klein-Foglio couldn’t think of a more appropriate feeling. However, “happy” is the word she would use to describe her 3-year-old, Benjamin.
Despite the diagnosis Jessica and husband Michael received a year ago, the Julliard Opera Center graduate discovered a way to entwine her love for music and her son. She collaborated with doctors and other families affected by the disease for the first-ever research event and family camp in Tarrytown.
“It’s been in the works the whole time,” Jessica said. “I just feel like no one can do it better when it’s your own child.”
Before leading the STAR Foundation, an official affiliate of The Children’s Hospital at Montefiore and Albert Einstein College of Medicine — short for Salla Treatment and Research — Jessica zipped between the United States and Europe to sing. It was Julliard that attracted the Chicago native to New York City, where she graduated in 2009.
Before Benjamin was born, Jessica performed with the New York Philharmonic and was a principal artist with the New York City Opera.
“Then I had Ben in 2015 and I immediately knew something was wrong with Ben and I had to stop,” Jessica said.
Salla disease affects not only muscle tone and strength, but also intellectual development. It also severely shortens the lifespan of those afflicted, sometimes patients not even making out of childhood.
The transition — nor the diagnosis — was easy for Jessica.
“So not only does hope of your career end, but the hope for your child, there’s an ending to that too,” Jessica said. “There’s a total loss of hope, and I felt like I needed to use my craft and use my gifts and my connections.”
Out of a wishful attitude — and necessity — the STAR Foundation was formed.
The nonprofit is only the beginning. Last weekend’s Tarrytown event is just the start, with more concerts in the name of Salla and use of her musical connections to pull it off. In Tarrytown, she attracted Grammy-winning friend John Patitucci to perform, while another buddy, David Halperin, guided her through the bureaucratic mountain of charity paperwork.
Also pitching in are Montefiore, the National Institute of Health and Stanford University, among others.
Anyone seeing Benjamin in his stroller or toddling about may not even realize his motor and intellectual skills are affected, and someday, seizures will come. Yet unless Benjamin hits his head, every day’s a good day, Jessica said. His strength is found in the amount of love he is always willing to give.
Before Benjamin started school, he had therapy almost 21 times a week. Now with her son gone during the day, Jessica has been able to work more deeply on the foundation — and with families.
“They have such a loss of hope, and they say to me, ‘Why are you doing this? For what?’” Jessica said. “And I say to them, ‘Then we shouldn’t have gone to the moon, or we shouldn’t have hoped for the light bulb, or we shouldn’t have hoped to fly a plane because it all has to start from somewhere.’
“I say it’s probably not going to help our kids, but this research, it just needs to start so future diagnosed families can have access to medication. And if that gives you a purpose in this, then that is really empowering.”
Invited families, from as far as Switzerland, also had access to therapy at the event. During the think-tank, doctors visited with patients and loved ones, and then shared what they had learned and what they needed to get the research ball rolling.
For Jessica, collaboration is the goal.
Jessica and her husband have transformed Benjamin’s diagnosis into a lesson for their older son Michael Jr., and a movement of service. The older Michael sits on the board at Skyview-on-the-Hudson while still finding time to coach Little League.
The Klein-Foglio family also hosts the majority of Skyview’s annual holiday parties while Jessica teaches music lessons around the community and occasionally has her students perform at local nursing homes.
“We have fully immersed ourselves into making lemonade out of lemons,” Jessica said. “Benjamin has taught us to live to our fullest potential, and he’s going to teach Mikey the same.
“It’s important for us to teach Mikey that hard times come, but it just depends on how you face them.”