SOUTH PLAINFIELD - During a virtual South Plainfield Council Meeting on Nov. 16, Mayor Matthew Anesh proclaimed Dec. 4 to be “PKS Awareness Day.” Accepting the proclamation was eleven-year-old Brianna Feeney, who has Pallister-Killian Syndrome (PKS), and her mother Patricia Trenchak Feeney.
PKS is a rare chromosome abnormality that occurs for no known reason. Those with PKS have low muscle tone, profound cognitive delays, visual and hearing impairments, as well as the potential for seizures and other life-threatening medical conditions. Only about 500 people in the world have been diagnosed with PKS, although doctors say it’s much more prevalent with close to 2,000 potential cases in the United States alone. Many go undiagnosed with this disorder since PKS is difficult to diagnose with current methods of testing.
“Whereas, Pallister-Killian Mosaic Syndrome is a rare chromosomal disorder causing developmental delays, heart defects, sensory loss, diaphragmatic hernias, seizures, and other serious physical challenges,” said Anesh. “And Whereas, there is no cure or preventative measure yet known and far too many children surmise to this rare syndrome. We know that it is not our challenges that define us, but rather how we rise above them, and with that in mind, the Borough of South Plainfield seeks to raise awareness of PKS, support patients with the disorder, and advocate for vital research.”
Anesh then proclaimed Dec. 4, 2020 “PKS Awareness Day” in the Borough of South Plainfield and called upon everyone to spread awareness about the prevalence of PKS.
“I wanted to thank you for acknowledging Pallister Killian Syndrome,” said Brianna's mother. “Rare disorders are not often acknowledged because they affect such a small amount of the population, but there are more and more chromosomal disorders coming into the light now. Research is being done and people are advocating for those groups.”
With additional research, those with undiagnosed PKS may someday find answers and the support they need in life to reach their optimal potential, Trenchak Feeney added.
“I appreciate everything South Plainfield is doing for the cause and also for our family,” said Trenchak Feeney. “Kids with Pallister Killian Syndrome have genetic defects, cognitive delays, visual impairments, and audio impairments, but the support I have had from this town has been significant and overwhelming and really does touch my heart.”
Brianna has also been named the Ambassador for New Jersey State Elks Association Special Children’s Committee for Area 4. A banner on the South Plainfield Elks Lodge hangs in her honor as she represents South Plainfield and children with special needs throughout the state of New Jersey.
According to her mother, Brianna has come farther than thought possible with the help of supportive family, friends, therapists, and teachers. She is non-verbal, but she is extremely expressive in other ways. She squeals with happiness, moves to the beat of music to dance, smiles often, and cries when she’s sad. She uses adaptive sign language to communicate with her eyes and hands. She is learning to use an eye gaze communication device where she can glance at icons on a computer screen and the computer becomes her voice. Brianna has cortical visual impairment and has some hearing impairments, but she is able to work with what sight and hearing she has to communicate.
Those who know her say that Brianna has quite the personality and loves to express herself with laughter and hugs. She seems to sense when someone is down or needs help and is always there with a loving embrace and a smile.
Brianna's mother says that children with special needs seem to have one thing in common – unconditional love. Despite any physical or cognitive limitations, they express themselves without worry about what others may think, they live in the moment and treasure every second they have with loved ones.
“PKS Awareness Day” was instituted by the non-profit organization, PKS Kids. Aimed at helping all people involved with Pallister-Killian Syndrome, PKS Kids was established to promote research, provide education, and raise awareness within the medical community to ensure early diagnosis as well as to provide resources and support to families, therapists and caregivers of children with PKS.
After accepting the proclamation, Brianna's mother made the request that everyone wear red on Dec. 4 in observance of PKS Awareness Day.
“I really want to thank you all and if you could wear red on Dec. 4 for PKS Day, that would be wonderful!” said Trenchak Feeney.
More information about Pallister-Killian Mosaic Syndrome can be found at https://www.pkskids.com, the official PKS Kids website.