Their Children’s Needs Brought Them to Us and Music Brought Them Together

September 14th is our annual Ability Rocks (formerly Families Rock), at Dickinson Park in Newtown. Steve Tracy and Jay Willie are the Rock and Roll Dads behind the twelve-year event.

Ability continues its REFLECTIONS series to celebrate the people of our history who’ve supported possibilities, raised the bar, innovated programs, and brought fresh ideas to make life good for the people we serve. Jay and Steve’s sons, J.C. and Christopher, residents in Ability homes, brought them together as Ability’s Families Rock impresarios.

Loaded with natural talent, they both played the Blues, Jazz and Rock & Roll during childhoods that included few lessons. Both had the talent and drive to speed past the basics and progress into genres more fitting their vision as budding rockers to become the multitalented dads who bring joy to the people we serve, their families and everyone fortunate enough to hear them perform.

For Steve Tracy, it Started with the Accordion in Syracuse, New York

Steve started lessons at 10, and immediately taught himself the baseline against his teacher’s wishes. They had a parting of the ways, so he continued to teach himself the keyboard on his mom’s electric organ – playing church music.

He mastered the clarinet and the sax for the marching band while a high school student in New Jersey—where his met the love of his life, “first and only groupie” his future wife, Mary.

Unable to even imagine what else the future held—Steve was heading into a trifecta of our nation’s most esteemed centers of academia, musical connections and friendships to last a lifetime, an extraordinary family-life and career, a goat farm, and a life of transformative humanitarian impact.

It was during high school that Steve met Horace “Bud” Fairlamb. As their school’s candidates for the New York Herald Tribune World Youth Forum, the two met at conferences; both loved music and planned to apply to Princeton. Once there in the School of Public and International Affairs, Steve played the clarinet in Princeton’s Marching Band.

It Was Here That Ability Beyond’s Rock and Roll History Began For Steve

Bud, played banjo and guitar for Princeton’s Footnotes, and later started his own band, Sadisfaction in 1966, with Steve joining on keyboards. By 1967 they both joined Princeton’s existing college rock band, Tyger Dynasty along with Jimmy Catterall and Tex Biertuempfel.

For Steve and the others, Tyger Dynasty was the dream college gig— the band was in demand at regional colleges throughout New Jersey and Pennsylvania, getting paid $500 per performance, and often sharing the bill with the legendary Paul Butterfield Blues Band, considered one of the most influential blues bands of the 1960’s for inspiring the creation of the American Blues-Rock movement.

After their graduations they married and were off to Philadelphia for Steve’s first teaching job and Mary’s in nursing. Steve’s bandmates also headed into teaching, grad programs and university positions throughout the U.S.

While in Philadelphia in 1970, Christopher their firstborn came into their lives weighing only about five pounds. Except for his size they saw no evidence of developmental issues. Around Chris’ first birthday, he suffered a serious seizure that landed him in the hospital. Following a series of tests and examinations, the doctors told Mary and Steve that Chris had cerebral palsy, and that it was unlikely that he would ever speak or walk. They took their baby home and did their best to keep him healthy and happy, resisting advice from some doctors and family members to place Christopher in an institution.

When Christopher turned 5 years-old, they tried to enroll him in their local public school in Shrub Oak, and were told, “We don’t take children like him”, so Chris’ early education and care took place at a center for children with disabilities at Saint Agnes Hospital in White Plains.

Also during that time, Steve completed his masters at Columbia and the family planned their next move for Steve to pursue his doctorate at Harvard.

In 1974 and 1976, Bryan and Jeremy entered their lives in good health, and in 1977, the family moved to Boston; then to Connecticut in 1979 where Dr. Steve Tracy began a long and highly-respected career and superintendent of schools in New Milford, Edison, Derby, and the Connecticut Department of Children and Families in Hartford.

Christopher has never learned to speak, but he did learn to walk in 1979! He attended special programs in Harwinton and at New Milford High School, where he graduated in 1990. Soon after, Christopher was fortunate to be among the initial group of young men to move into Ability’s Greenview group home in New Milford, where he has lived ever since.

It was during that time that the Ability Board of Directors invites Steve to join their ranks. Steve also beings his expertise to Ability’s Mission Validation Committee and on Ability’s Board of Trustees.

Steve is also on the board of the Glasser Institute for Choice Therapy; he chairs the Danbury Charter School Development Committee; has been a managing partner of Connecticut Youth Forward, and he and Mary have a working dairy farm with goats providing milk for 20 area mothers whose children are unable to digest cow’s milk— all in addition to 4 alpaca, chickens, rabbits, koi fish and two dogs.

Mary and Steve often repeat that they could not be more grateful for the care and attention that Christopher has received from the caring staff at Greenview over the 34 years. “To a person, they have treated our son as their own!”

Yet, it’s Steve and Mary’s time, generosity and kindness that transform so many lives here at Ability because their plate is never too full to be a good neighbor—locally or globally.

Rock and Roll Returns for Steve AND Ability Beyond

In 2009, Steve and Bud hatched a plan to all meet at Bud’s home outside of Houston. As host in 2010, Bud would rent equipment too cumbersome to ship and Tyger Dynasty would work toward becoming performance-ready with the aim of getting an annual gig at each host’s locale.

The following year, Jim, in Southern California, hosted and booked Tyger Dynasty their first performance together since 1969—at Rock and Roll Pizza in Southern Los Angeles.

By 2012, it would be Steve’s turn to host Tyger Dynasty; what a gift it became for Ability Beyond!

At an Ability parents’ meeting, Jay and Steve’s interest in the Blues/Rock came up. They brainstormed about supporting the people of Ability Beyond through their mutual passion and booked their first Families Rock at the Irish American Cultural Center for October of 2012.

Together again to support a mission that meant so much in Christopher’s life—Bud, Larry Jimmy and Tex came from throughout the U.S. to join Steve. They recreated their magic for a new generation, many whose lives precluded the college concert scene, but reveled in the exhilaration of the music and the joy of having parents on stage creating so much fun.

Jay Willie Can’t Remember When He Didn’t Love The Blues

Even in his early teens studying classical guitar, he had an insatiable desire to master the Delta Blues-style as he followed Blues legends such as Muddy Waters, BB King and Robert Johnson. The guitar hero who became his greatest muse was the late Johnny Winter—and the many creative turns his musical life encompassed put Jay in Johnny’s circle as a performer with members of Johnny Winter’s group as well as his equally renown brother, Edgar Winter.

Ability Dad Jay Willie is also a local businessman who inherited his father Andrew’s entrepreneurship and prescience for the packaging market’s needs. As CEO of the national Independent Carton Group (ICG). Jay learned the business at an early age from his dad— a career employee and co-owner of Curtis Packaging in Newtown; Andrew was also ICP’s founding CEO.

Another gift in Jay’s life was meeting his future wife Lynn Prebble in 1977. At that time. Lynn a nursing student and lover of classical music was on a path toward advanced degrees in nursing. Lynn’s expertise would someday nurture every possibility to ameliorate their future son’s challenges brought about by Jacobsen Syndrome. Just as Steve and Mary became for Chris—Lynn and Jay would prove to be a formidable team of advocates for J. C. on behalf of everyone Ability serves.

As a kindred spirit of the Delta Blues, Jay grew up in the bucolic, rolling hills of Newtown, Connecticut on 17 acres that morphed into an idyllic family compound of extended family, decades of big holiday celebrations—and loads of talent with a deep commitment to their local community.

Between the Jay Willie Blues Band; the Jay Willie Band, playing more classic rock; and the Willie Portera Acoustic Trio, with Jay’s brother Todd and Tom Portera—the Willie name is widely known in the region for giving back by sharing their love of music—all in addition to their advocacy on behalf of their son, J.C. and the comprehensive needs people with disability experienced.

By age16 in the mid-1970’s, Jay, a student at Newtown High, started attending every Johnny Winter show possible. Within two years he met Winter’s drummer Bobby Torello after a New Haven concert, who invited him to stay for an afterparty to get an autographed photo of Johnny. During the late 1980’s after college and as an employee at Curtis Packaging, Jay and his perennial music partner, his brother Todd, formed Gutter Boogie, a classic rock band with an extensive following throughout the region.

More than 20 years after their first meeting, Jay and Torello met again. It was then that Jay was invited to sit in with Torello’s band, Electric Circus. The friendship led to collaborations with another Johnny Winter Band member, Tommy Shannon, and being signed a record label in Belgium for a CD called, “The Real Deal” with extensive airplay in Europe.

From there Jay and Torello went on to record six more CDs through 2020 with renown artists from around the world, and they are currently working on another one—”Still Raising Cain” based on the biography of Johnny Winter’s life. Jay also continues to be a voting member of the Grammy’s under the categories of Blues, Jazz, Rock & Roll and Country.

Jay often says, “Music is my hobby, and I’ve been so fortunate to have had some success with it, with a record label—yet never having to tour and be away from my family.”

J.C. Willie Brought his Talented Family Into Ability

Jay’s wife Lynn gave birth to their first child J.C. in 1983. Lynn’s awareness as a nurse, her early experience in having worked with children with cerebral palsy and her tenacity in fighting for J.C.’s needs made her an inspiration in Ability’s world of disability advocacy— also her understanding of the power of music would be deeply enriching for J.C.

J.C. was three and half weeks late, was born by emergency cesarean section and spent four days in the Neonatal Intensive Care Unit (NICU). Lynn kept taking his vital signs and noticed some odd appearances—looking for anything that comes in threes as an anomaly that would be a syndrome.

When she questioned the neonatal nurse practitioner, the nurse told Lynn and Jay not to worry, that Lynn’s findings were seen occasionally. However, when J.C. was two months old, he still had hypertonicity (a severe muscle rigidity that can exhibit as awkward muscle contractions) that caused him to turn around in his crib.

Local doctors first diagnosed J.C. as having cerebral palsy, but Lynn had worked with children at a special needs camp, and J.C. was not like any child with CP she had known. They decided to take him to Newington’s Children Hospital to see a geneticist for evaluation.

Newington immediately diagnosed his condition and confirmed it with genetic testing. J.C. was diagnosed as having “Long Arm Deletion of the Eleventh Chromosome”, known as Jacobsen Syndrome. J.C.’s diagnosis is mainly characterized by craniofacial dysmorphism, congenital heart disease, intellectual disabilities, a bleeding disorder, structural kidney defects and immunodeficiency. Because each child with Jacobson’s syndrome can have more or less long arm chromosomal deletion—the prognosis can vary for each child with various degrees of neurological and physical characteristics of the syndrome. From that point on, J.C. had physical therapy twice a week, speech therapy—basically learning reflexes he lacked, as well as balance.

As Lynn took piano lessons at the house, she’d have J.C. on her lap to play whatever she played. Lynn played by reading music, and J.C. has a gift to repeat on the piano whatever he’s heard—he can play anything by ear!

At eleven he was transferred to Staples High School, a regional school for children with developmental and intellectual disabilities. There, J.C. also was diagnosed with autism tendencies. Staples was pivotal in his transition to Ability Beyond.

After researching six providers and finding that Ability Beyond had the best services for J. C.’s needs, Lynn, Jay and J.C. became a part of our Ability Family.

In 2004, J.C. started his Ability day program—and Lynn’s activism was off to new heights. She wrote letters to Governor Jodi Rell with J.C.’s picture on them to put a face to his name; went to the Capital at least once a month and had J. C.’s picture with his name on any signage.

Lynn joined the Connecticut Nurses Association to get on the Governors Relations’ Committee, where she wrote testimony for women and children. They went to all the legislative council meetings to advocate for persons with special needs, as well as got to know state legislators personally.

In 2007, after going to the capitol once a month and calling every week, J.C. was accepted into an Ability group home that just opened in Prospect, CT.  He had to visit to be sure he was a good fit—and he found his second home and more loving family as Jay and Lynn sum up his life at Ability:

“J.C. is relatively a very happy, innocent adult who absolutely loves his music and people.  Because of his happiness and his kind nature, people love him.  We are so blessed to have had so many people involved in his journey into Ability—J.C. has two life coaches that have been with him since he went into his group home, they are family to us!  We are so blessed.”

In addition to JC, Lynn and Jay have two wonderful daughters, Jaime, two and half years younger than JC , and Jina, six and half years younger.

Families Rock Became the Beloved Annual Event

It was Jay’s sister, Amy Willie Mangold, Newtown’s director of parks and recreation, made the transition to Dickinson Park seamless for Ability’s Families Rock during the event’s first year performing there. The accessibility of the park allowed the event to host more than 100 people annually—and at no cost.

With all our Ability Family’s thanks to Jay, Steve, Lynn, and Mary—but especially to Chris and J.C.—you inspired and empowered so much love that touched countless lives.

These two high-octane families found venues, brought friends in to perform, helped promote, solicited raffle prizes, sold 50/50s during—got friends and family out on the dance floor (wheelchairs and all) and put their hearts and souls into including everyone possible from the Ability Family into a free event filled with such spirit that only music, memories and people loving life together in the moment can create.

Take Action

Ability Rocks is just one of many activities we offer throughout the year for our community and the more than 3,000 people with disabilities we serve each year. Find out more about what you can do to support these efforts today!