Elizabeth was born in Pittsburgh, PA (USA) on May 10, 2013. After a challenging journey into this world, followed by a NICU stay, she was welcomed home by her loving parents Tara and Jason and her adoring older brother, Celtan. Her family always believed in her despite the odds that were stacked against her, and it was their honor to watch her prove multiple times in her short life that miracles absolutely do exist. Elizabeth was one of the first individuals in the world to be diagnosed with ZTTK syndrome. After her diagnosis, her mother Tara relentlessly advocated for her and the other children with this ultra-rare genetic disease. What started slowly in 2016 as a small Facebook support group, grew steadily into the global community that exists today. After years of hard work and dedication, Tara was one of the founders of the ZTTK SON-Shine Foundation in 2021, shortly before Elizabeth’s passing.

Elizabeth was truly an angel on earth. Everyone who met her felt her joy, laughter and bravery in immeasurable amounts. Elizabeth found joy in many things, especially swinging, dancing, and listening to music. She was particularly overjoyed to meet Mickey Mouse on her Make-A-Wish trip to Disney. She also especially loved “Frozen” and would watch the movie on repeat. Elizabeth loved to travel and go on car rides, and she utterly enjoyed eating French fries and ice cream. Elizabeth was always happiest when she was moving and dancing. Her family is grateful to so many people who helped her achieve unbelievable things in her eight years on earth. She attended a School for Blind Children and was adored by the staff. She enjoyed activities such outpatient therapy, school of dance, Special Olympics and even had a favorite horse. She was beloved by so many, including many nurses and doctors who cared for her over the years.

On August 6, 2021 after bravely fighting a courageous battle in the hospital for 5 weeks following a sudden neurological event, Elizabeth passed into eternal life peacefully, in her mother’s arms, snuggled by her daddy and surrounded by the love of her brother and many family members. Elizabeth was truly a gift to all who knew her and were able to experience her light. She will forever continue to sparkle from heaven as the brightest diamond in the sky.