Elizabeth Jeanne Hackwelder, forever 8 years old, passed into everlasting life with Jesus, the angels, saints, and the generations of love that have passed before her that were waiting to greet her with open arms on August 6. She passed peacefully in her mother’s arms, with her daddy snuggled beside her, and her beloved brother and other family members surrounding her with love after coming home on hospice earlier that day. Since July 2nd at Children’s Hospital in Pittsburgh, Elizabeth had fought a brave and courageous battle with an unexpected and severe event in her brain that occurred, due to abnormalities in her brain that she was born with. She also has shown remarkable strength and bravery in her 8 years with her many medical and developmental struggles due to a genetic syndrome she was born with called ZTTK Syndrome. She was one of the first patients in the world diagnosed with the syndrome when it was discovered in 2015.
Elizabeth was born in Pittsburgh on May 10, 2013 after a very difficult pregnancy and delivery. She was loved and adored beyond measure by her parents, Tara (Bly) and Jason Hackwelder of Chicora, and her older brother, Celtan, who will be entering 5th grade at Chicora Elementary. Her family always believed in her despite odds that were stacked against her, and it was their honor to watch her prove multiple times in her short life that miracles absolutely exist. They fiercely advocated for her so that she could have the best life she could possibly have, and they were so grateful to be able to fully experience her precious life every single day with her.
Elizabeth was truly an angel on Earth. Everyone who met Elizabeth knew joy, laughter, and bravery in ways that are immeasurable. Elizabeth found joy in all things, especially swinging, dancing, her parents and brother, and listening to her favorite music. She saw joy and made others see joy and happiness in things that often escape others, because despite her struggles, she never knew anything but love. Elizabeth loved her family, her school, her home nurse Kelly, and even many of her doctors and nurses. Even though she said few words, you could feel the joy and happiness radiate from her just by being in her presence. She was truly a gift to all who knew her and got to experience her light. Elizabeth’s light was always shining bright for others to see, and now it will continue to sparkle from the heavens like the brightest diamond in the sky.
Elizabeth loved music, and it was the language of her soul. Elizabeth loved the Beatles, and her favorite songs were Lucy in the Sky with Diamonds and Let it Be. The walls of her home will forever echo with her laughter as she danced with her parents to these and many other songs. Elizabeth also loved the Allman Brothers, Vampire Weekend, Led Zeppelin, Fleetwood Mac, The Lumineers, Airborne Toxic Event, Mumford and Sons, Jimmy Buffet, and The Band. She even enjoyed Metallica and Twisted Sister, who were her brother’s favorites. Her face would light up when a favorite song came on. She loved to dance and exuded happiness in her dancing.
Elizabeth had a few favorite things that she enjoyed and adored more than anything in the world. She loved and adored her mommy and daddy, her big brother, and her St. Bernard, Izzy. Elizabeth liked to lay on Izzy’s back, and she liked to snuggle into Izzy and pet her soft fur. Elizabeth loved playing with her brother, and he was exceptionally gentle and kind to her. Her brother was also her biggest cheerleader, and she looked up to him. Elizabeth loved her dolls, sensory toys, Elmo, The Wiggles, Cocomelon, and Disney. She was particularly overjoyed to meet Mickey Mouse on her Make-A-Wish trip to Disney, and even Mickey Mouse was touched by her overwhelming joy to meet him. Elizabeth also loved the Disney Princesses, and she was a princess of the highest order. She loved crowns, tiaras, and princess dresses. Elizabeth also enjoyed our yearly trip to see The Nutcracker at Christmas each year. She loved to travel, and she especially loved to go on car rides. Elizabeth utterly enjoyed French fries and ice cream, and she also loved to paint. She also loved Frozen so much, and she would repeatedly watch the movies. Elizabeth loved the Frozen characters, and she would become obviously and incredibly overjoyed when she heard music or saw any of the characters from Frozen.
Elizabeth attended the Western PA School for Blind Children and was adored by the staff. She also enjoyed her time with her outpatient therapists at Children’s Hospital of Pittsburgh, Early Intervention, StormHarbor at SRU with her favorite horse Liver, Siri’s School of Dance, and the Special Olympics. Elizabeth was her happiest when she was moving and dancing, and her parents and brother are so grateful to all of the teams to helped them to help her achieve unbelievable things in her lifetime.
Elizabeth is survived by her adoring parents, Jason and Tara (Bly) Hackwelder, and her beloved brother, Celtan, of Chicora. She is also survived by her maternal grandparents, Jeff and Amy (Kepple) Bly, of Chicora, and her paternal grandfather, William Hackwelder, of Mercer. Elizabeth is also survived by her aunts, uncles, and cousins: Holly and Jake Wilson and their daughter Josie of Butler; Emily and Ryan Rekich and their children Aubrie and Mason of Butler; Becca Bly of Boston; Carrie Hackwelder-Longo and her daughter Sadie of Emlenton; Eric and Sandy Hackwelder and their twins Livvy and Major of Erie; Jamie and Nuria Hackwelder and their children Alex, Markel, and Alba of Grove City; and William (Billy) Hackwelder and Alexandra from NYC. She is also survived by her great-grandparents: David and Shirley Kepple of Chicora and Roland and Joan Bly of Karns City. Elizabeth is also survived by numerous great aunts and uncles, extended cousins, and extended family who also loved her dearly. Elizabeth was also deeply loved by her community, her doctors and teams at Children’s Hospital of Pittsburgh, her school, and her ZTTK family. She was preceded in death by her paternal grandmother Evelyn Jeanne Hackwelder and her paternal cousin Chase Longo.
Elizabeth was deeply and profoundly loved by all who knew her, and she will also be deeply and profoundly missed, especially by her parents and brother, for what will seem like an eternity until we can be reunited with her in heaven again.
Friends and Family of Elizabeth Hackwelder will be received at Hile Funeral Home of Chicora, 339 Chicora Fenelton Road, Chicora from 6-9 p.m. Tuesday, and from noon-3 p.m. and 6-9 p.m. Wednesday. A funeral service will be held at the Holy Trinity Lutheran Church, 2217 Chicora Road, Chicora, at 11 a.m. Thursday with the church pastor, Rev. Joseph Boomhower, officiating. All who knew and loved Elizabeth are welcome to attend her viewings and funeral.
The family would like to request that anyone attending the viewings or funeral to please feel free to wear their Team Elizabeth Jeanne t-shirts, the color pink, or any favorite color of your choice. Elizabeth loved colors, and she especially loved pink. Elizabeth and her family continue to be deeply appreciative of the support of the community for her and her family, and they would be honored to see her shirts now and in the future, but especially over the coming days as they lay her to rest and celebrate her beautiful life.
In lieu of flowers, the family humbly requests that donations be sent to the ZTTK SONshine Foundation by visiting www.zttksonshinefoundation.org, The Western PA School for Blind Children by visiting www.wpsbc.org, the Children’s Hospital of Pittsburgh Foundation by visiting www.givetochildrens.org, or that you share a smile with a stranger, like Elizabeth would always do. For more information or to send a condolence, please visit www.hilefh.com
To send flowers to the family or plant a tree in memory of Elizabeth Jeanne Hackwelder, please visit our floral store.