Better2getherRVA

Champions – Meet Lydia

Likes: Music, swings, baths and playing with her big sister, Finley.

Dislikes: All things medical: shots, blood draws and other medical procedures.

Hospitalizations: She underwent her first surgery at a month old with three different teams of surgeons. She spent the first three months of her life in the hospital.

Favorite Animal/Lovey: She received a unicorn lovey from her Church Pastor at her first surgery, and still sleeps with it every night.

Therapies Received: Occupational Therapy, Physical Therapy, Speech Therapy, and Chiropractic.

Clinics Attended: Physical Medicine and Rehabilitation, Pulmonary, ENT, Spasticity Clinic, Gastroenterology and Nutrition, Neurology, Neurosurgery, Orthopedics, Audiology, Endocrinology, Genetics and the Arthrogryposis Clinic at Shriner’s Philadelphia and Nemours DuPont.

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When Lydia was born, a dear family friend gave parents James and Jan a card that read, “She may be little, but she is fierce.” That card is now framed and hangs on Lydia’s bedroom wall. “Lydia embodies that small card,” Jan explains. “She is small for her age and is still so young, but she touches the hearts of people she has met (and even people she hasn’t met) with her fierce spirit.”

Diagnosed with arthrogryposis multiplex congenita (AMC) shortly after her birth, Lydia’s young life has been filled with medical appointments, clinics, procedures, and hospitalizations. But it is also filled with an abundance of love and support from family, friends, medical staff, and the community.

“From the day she was born, she has fought for every breath she takes,” her mom shares. “There were days when she was in the hospital when we were praying that we’d wake up from this nightmare. But in the short 18 months she has been on her laps around the sun, she has captured our hearts and souls. She is perfect and wonderfully made.”

Arthrogyposis occurs in 1 in 3,000 births and simply means the contracture of joints. There is a range in terms of how it presents clinically, and how it impacts individuals. For Lydia, her medical needs have included a ventilator, at times, as well as a tracheostomy, and serial casting for her clubfoot. Through it all, she has demonstrated a strength that has both amazed and inspired her loved ones. “Lydia’s determination and sheer willpower is a force I’ve never seen before in a person, much less a tiny human,” Jan observes. “During her hospitalizations, she showed her medical team just how incredibly strong she is. Her name means “beautiful” and we have come to call her our Beautiful Warrior.

Music is one of Lydia’s greatest delights. Since her earliest days in the NICU, music has simultaneously soothed her and brought her joy. As a newborn, she loved being rocked and hearing songs. As her arm and finger movements progressed, she began waving her arms and smiling broadly at the first sounds of music. Her mom shares, “Pre-COVID, on many Sundays, she could be seen smiling and bobbing her head in the back of the Church during worship.” Each month, Lydia enjoys participating in the Better2getherRVA Music Therapy program, and its impact has been so meaningful. “One of Lydia’s NICU nurses is a volunteer for the program,” Jan explains, “It’s been a monthly treat!”

Without question, one of the most special and significant aspects of Lydia’s life is the bond she shares with her older sister, Finley. Her mom explains, “The night Lydia came home from the hospital for the first time, Finley begged to hold her baby sister in her lap. Mind you, we were absolutely terrified about caring for a baby with a trach and g-tube, let alone letting a 2-year-old hold her.” Jan and James positioned their older daughter and allowed her to cradle her new baby sister in her lap. They have a treasured photo of Finley looking down at Lydia, gently patting her cheek. Jan recalls, “Finley kept whispering, ‘I have you baby sister, I have you.’”

Although Finley is still working on singing her ABCs, she knows the names of all the medical equipment in the house and when it is needed for her sister. “Lydia watches Finley across the room with a look of utter admiration and lets Finley get away with stuff no one else would try,” Jan says. “Finley was the first to get Lydia to eat food consistently by mouth, and she can always make her laugh. When Lydia is upset, Finley knows just how to calm her. Lydia is now learning how to tell her sister to “back off” with her voice, and that has been an entertaining process for all!”

June 30 is AMC Awareness Day and it provides an opportunity for others to learn about this rare medical condition. You might recognize the name because a recent finalist on American Idol, Marna Michele, has AMC. To learn more, please visit AMCSI at https://amcsupport.org/

“The AMC community has been a big source of support and encouragement as we have walked this journey with Lydia,” Jan explains. “With the local support of Better2gether and the larger community support of AMCSI, we have felt better prepared for navigating the road ahead.”

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