Cognitive Age: 3/4
Therapies: Vision, speech, occupational and physical therapies
Schooling: Mainstream schooling in life skills with IEP
Siblings: Hannah (25) & Emiley (24)
Parents: Jennifer & Brian Chambers
Kabuki Symptoms: Feeding difficulty (tube fed), chronic infections, pulmonary fibrosis, cardiomyopathy, ear tubes, GERD, VSD, hip dysplasia, patellar dislocation, epilepsy, submucousal cleft palate, split and notched uvula, pelvic kidney, coloboma
Abbey's Story: Abbey is the youngest of three girls, her mom’s last baby. Jennifer’s pregnancy was relatively uneventful, except that Abbey was breech. Three weeks before her due date, doctors attempted to turn the baby. Abbey’s heart rate dropped to a dangerous level, and Jennifer was rushed for an emergency C-Section.
Jennifer was in no way prepared for that to happen. She had gone to the appointment with her sister, so Abbey's dad could go to work. Everyone thought it was going to be an in and out appointment, no big deal, so it was a mad rush to get everyone there and in place for the procedure. After Abbey was born, everything would change. The doctors kept finding things wrong with Abbey, and 16 hours after birth she was transferred to their local children’s hospital. She would spend almost two months there, a total of 58 days. The doctors would discover her cleft palate, split clavicle and dislocated hip. Her parents would not be able to hold her for 4 weeks!
Around the time they were able to hold her, Abbey had her G-tube placed to assist with feeding. She continues to be tube-fed today.
From the very beginning, doctors told Jennifer that Abbey would never walk. She walked at age 2. This trend continued as she grew, doctors would say that Abbey would never do this or never do that, and she continued to defy the odds and prove them wrong. Jennifer says, “Time after time she has proven to be a miracle. she is a blessing. To see her overcome so much makes things I find troubling so trivial.”
She attended a traditional public school in the life skills/resource classroom with an IEP. However, problems with the school’s implementation of her IEP along with the COVID-19 pandemic led Jennifer to enroll Abbey in an online program.
Over the years Abbey has had 4 sets of ear tubes, but her cleft palate remains unrepaired. When she was 10 years old, she ended up admitted to the hospital with a severe case of pneumonia. It completely took over her lungs and doctors weren’t sure she was going to survive. Every test run to determine a course of treatment came back negative. Abbey was on a ventilator, and when they tried to remove it to see if she could breathe on her own, she failed. Two days later she underwent a tracheostomy. Mere hours after surgery, Abbey was up and smiling, playing with her sticker book!
Everyone had prepared themselves for Abbey coming home to never walk again, to never take a breath without a ventilator for the rest of her life. Doctors said she would only live a couple more years. But, in traditional Abbey style, over the next several weeks, she would come off of the ventilator during the day. She even walked around the hospital! Doctors were, “Astounded and amazed with her,” as Jennifer puts it! Abbey now covers her trach to have conversations and is only on the vent at night when she sleeps. She is limited and has severe lung damage, but in traditional Kabuki style, she hasn’t let it slow her down! She even played adaptive softball!
Abbey was diagnosed with pulmonary fibrosis and will have the trach and vent for the rest of her life. Doctors gave her 2.5 years to live after all of this, but that was 7 years ago and she’s showing no signs of slowing down! She has thrived since beginning subcutaneous IgG infusions, allowing her to witness the birth of her niece Ezra (who has Abbey’s name in the middle) and nephew Cooper. She loves to hold them and her sisters, Hannah and Emiley, adore Abbey.
Abbey’s Favorites: “She likes YouTube, Facebook and Snapchat. We always tease she will be an internet star when she grows up!”
Abbey’s Relationship With Her Siblings: “She is very close to both her sisters, they both have been involved in her care since she came home from the hospital. Abbey loves music and taking pictures, when they lived at home they would dance and take pictures with her all day long. They can feed her, change her trach and operate her vent. They are her biggest fans!"
Advice for Kabuki families: “Just keep going, it will get better. Those smiles and silly little things make it all worth it.”
Advice for parents of “typical” children: “My child is no different, she likes TV, playing in her room, trying new things, friends, parties and testing my limits just like them. She may act differently and look at little different with her trach but it doesn’t make her any less. Teach your kid not to stare, ask questions and be kind.”
How Abbey has impacted the family: “I really know nothing else. Abbey is nearly 18, I have grown up with having a child with special needs. I would say I have changed as I am more assertive, I have to fight for her supplies, services and rights.”
Despite the lack of familial support for Jennifer, Abbey has some amazing caregivers. Jennifer and Brian are primary caregivers, both of her sisters help, and Abbey’s dad takes her 6 nights a month and will take her to appointments when they fall on days he has her. Abbey also has a home nurse two times a week, and with the help of Abbey's sisters and her husband Brian, Jennifer is able to work and earn an income to help support her family.
Abbey is a special girl who is an inspiration to everyone she meets. She has overcome and beaten the odds on many occasions, and we don’t expect her to stop now! Her beautiful, big blue eyes and fabulous smile are enough to melt just about anything. Keep on proving those doctors wrong, Abbey, you give the Kabuki community hope!