Age: 3 years
Cognitive Age: 3 years
Therapies: Physical and Occupational therapies
Parents: Precious Cline and Darrius Sheridan
Kabuki Symptoms: She has a lazy eye. She is also diagnosed with cerebellar atrophy, ataxia and BVVL, and is unable to walk
Delaney's Story: When Precious was pregnant with Delaney, everything was perfect. She didn't have any problems, no indications that there could be something wrong with her baby. Even after she was born, Delaney seemed very typical. Until she reached the age of two, when a bout of Hand, Foot and Mouth changed Darrius' and Precious' lives forever.
Until she got sick, Delaney was able to walk. She could talk. She could run and play and do everything her peers could do. Soon after her second birthday, though, she caught Hand, Foot and Mouth disease, a pretty contagious illness that plenty of kids get and share with their friends and siblings. They even share it with parents! It's highly contagious, but also treatable. Except in Delaney's case, this illness triggered something in her. She began to wobble when walking and fell a lot. She had severe tremors and could no longer feed herself or hold anything. She regressed to not being able to do any of the things she could do before.
Her loving parents took her to the doctor where they did an MRI and ran multiple tests. She was immediately admitted to the hospital so even more tests could be run. It was then that she was diagnosed with cerebellar atrophy and ataxia. According to the National Institute of Neurological Disorders and Stroke, Cerebellar degeneration is a process in which neurons (nerve cells) in the cerebellum - the area of the brain that controls coordination and balance - deteriorate and die. Ataxia, according to the National Ataxia Foundation, is a degenerative disease of the nervous system. Together these two diseases have taken away Delaney's ability to walk. She was in and out of the hospital for immune therapy and steroid treatments while they waited on genetic testing. The treatments seemed to help at the time, but it was all they could do until they knew the cause.
When genetic testing came back, Delaney was diagnosed not only with Kabuki syndrome, but also Brown-Vialetto-Van Laere (BVVL) syndrome, a rare neurological disorder characterized by progressive pontobulbar palsy associated with sensorineural deafness. Please click the link to read more about BVVL, it is complicated! There is no cure for BVVL and the prognosis for Delaney is that it will not get better. While BVVL is genetic, it was the illness that triggered the disease, which had otherwise seemed to lay dormant. She began Riboflavin treatments, which seemed to help her strength.
Delaney is still unable to walk and cannot dress herself, but she is working with physical and occupational therapy to help her get stronger and able to do the things she used to be able to do. She attends preschool, where she has an amazing teacher and gets therapy. Her speech is getting better as well, and as you can see from her photos, she has the happy demeanor of a Kabuki kid. She also has fight in her blood, an inability to give up, and makes everyone around her smile wherever she goes!
Delaney’s Favorites: "Delaney loves to dance and sing and loves walt Disney princesses. She loves to be outside, playing with play dough and painting and drawing. She loves playing with dolls and learning new things."
Advice for Kabuki families: "Keep researching, to ask questions and to never give up even when it gets hard and just keep praying for answers and to be as strong as your child that’s fighting."
Advice for parents of “typical” children: "I would like them to know that KK have the biggest hearts and so happy and strong and there is nothing they can’t do without support and encouragement from everyone."
How Delaney has impacted the family: "It has opened my eyes to things I had no idea existed. It makes you stronger and never give up even when the Dr’s have no idea what’s wrong we just keep fighting."
Delaney's journey is really just getting started, but it's clear that she and her family have an amazing support system around them. Life is not easy for a child with Kabuki syndrome, and when you add in other genetic issues, life gets even more complicated. But Precious and Darrius are doing a fabulous job raising this amazing little girl, and because of that, she will continue to fight and continue to bring smiles to the faces of those around her. She is truly an inspiration, a warrior, a superhero. When her body gave up on her, she didn't give up on it and decided to fight as hard as she could! Something she continues every day with a smile on her face.
***Huge thank you to Susan Sheridan, Delaney's grandma, for sharing her granddaughter with us!