My sweet friend Jan and her family lost their beloved two year old daughter, Lydia, very suddenly last week. Lydia truly was a beautiful warrior who defied all odds in the face of medical complexity. She was and will always be light and inspiration to her mom, her dad, her four-year-old sister Finley, and all those she met.

 

And just like sweet Lydia is an inspiration, so is the Shea Family. They are champions of perseverance, joy, and strength. For almost three years they battled alongside Lydia to make sure every day of her life was filled with laughter, love, and the best medical care out there.

 

This GoFundMe is important because the Shea Family is important. Please give any amount to help support them during these difficult times so they can focus on the unbearable task of trying to put what is left of the pieces of their life back.

 

My words could not do justice to the incredible life of this beautiful warrior and her extraordinary family. Please take a moment to read the touching tribute made in her obituary:

 

Lydia will no longer wake up to the sounds of "Who Let the Dogs Out," with her Night Momma, Ether. She left us on September 15, 2021. She was two.

 

Her life was a mixture of joy and medicine. Named after her paternal great-grandmother, with whom she shared a curious mind, Lydia was born at Henrico Doctors' Hospital on November 28, 2018. When she was born, she had difficulty breathing. A few days later, she was transferred to VCU Children's Hospital of Richmond where she spent two months in the NICU. She was released on February 8. Because Lydia never made anything easy, she contracted a nasty respiratory virus, and returned to the children's hospital where she spent three weeks on a ventilator.

 

Lydia, of North Chesterfield, Va., breathed her entire life through a tiny straw in her throat. Because of that, her older sister learned the words HME, trach and obturator, alongside her ABCs. Lydia took great pride in making daily trach care entertaining for her mother and gave a mischievous smile when reaching into the medical supply bin.

 

Nobody could get Lydia to laugh like her sister. Finley spent hours of her day entertaining her sister and telling her, "you are adorable," over and over. Lydia's belly laughs echoed throughout the home and filled every corner with joy as the sisters played.

 

Lydia had a rare genetic disorder called ZC4H2 with arthrogryposis. Only around 200 sweet children have been diagnosed in the world with ZC4H2. The syndrome causes contractions of the joints and creates mobility problems. But as her t-shirt from Misha Walker said, "I've been proving people wrong since the day I was born." The AMC community and ZC4H2 community wrapped their arms around Lydia to show her all things were possible.

 

As Lydia got stronger, she became more mobile. She scooted herself across the floor with her Firefly scoot and got into mischief. Her parents would walk away and come back, and she would be grabbing a toy or creating havoc. She often was in a wheelchair, and on a recent trip to grandpa and ghee's house, she discovered how to hide in the hallway by the dryer. Her mother said, "Where's Lydia?" and mischievous giggles emanated down the hallway.

 

Corn on the cob, tacos and waffle fries were her favorite food. She demanded waffle fries the moment the car approached the drive-through at Chick-fil-A. But Lydia didn't eat through her mouth for the first year of her life. She ate through her g-tube for the first year. However, once she discovered food, there was no turning back. She shared meals with her family every night and often played a game where she fed her sister, who pretended to be a gremlin on the ground. Laughter filled the room. She loved her grandpa's pancakes.

 

Lydia's smile filled a room and touched the lives of everyone who knew her. She loved to take walks in the woods and travel. Lydia spent numerous days at a house on the Rappahannock River and stared out onto the water, watching birds fly along the water. She went to her first baseball game the weekend before she passed and spent hours at the community pool over the summer.

 

An aspiring musician, Lydia's favorite instruments were the drums and the maracas. During one of her stays in the hospital, it was noted in the nurses' charts that the sound of maracas could be heard billowing out of Lydia's room. She loved to listen to Eminem and 90s rap music. She also repeatedly requested to watch Trolls World Tour and danced as Branch and Poppy performed "Just Sing," "Wanna Be" and "Who Let the Dogs Out."

 

Her favorite television show was Sesame Street, and her bed was filled with Elmo, Grover, Big Bird and the rest of the Sesame Street gang. She clapped along to the letter of the day, and though she spoke little, she understood everything that was said.

 

She is survived by her mother, Deborah Jan-Marie Shea; her father, James Michael Shea; and her sister, Finley Elizabeth-Marie Shea; numerous other family members.