Cognitive Age: 15 months
Therapies: Physical, Occupational, Speech and Nutritional Therapies
Siblings: Michaela (13), Madelyn (8) and Mia (6)
Parents: Nick and Megan Ryan
Kabuki Symptoms: Feeding and swallowing difficulty, ventricular septal defect (VSD, gradually closing on its own), tethered spinal cord, missing two toes on each foot, physical and developmental delays
Maeva's Story: Maeva Ryan is a sweet and caring 3-year old who loves to laugh and tumble with her sisters - and one of the most courageous little girls you will ever meet.
The family hails from Franklin, Indiana; named after inventor Benjamin Franklin and home to Franklin Liberal Arts College; the first in the state to admit women. A determined and resilient little girl, Maeva has dealt with more than her fair share of health issues.
Mom, Megan, relates, “What started out as a normal pregnancy ended in complete shock.”
An early inducement of birth gave the family cause for concern, but were reassured that the baby was healthy. However, complications soon became apparent.
A nightmarish few days/weeks followed, where baby Maeva was transferred to a more specialized hospital. As Megan recalls, “[I]t was probably the scariest time in my life. Not knowing whether she’d make it or not. Not being able to hold her for days. Being in separate hospitals. Every few hours I felt like it was more bad news....”
Like any parent, she and her partner Nick wanted to comfort and care for their baby. To have her apart from them and doing numerous tests was heartbreaking and terrifying, particularly until they got the official Kabuki diagnosis.
“Our world was turned upside down.”
Megan remembers, “By the time I was discharged and able to be at Riley’s [Hospital for Children] with Maeva, she was diagnosed with congenital heart defects, possible tethered spine, missing toes along with having to be tube fed and needing...a breathing tube. “
The seven weeks spent in the Neonatal Intensive Care Unit (NICU) were harrowing and filled with many questions. “[There was] very little sleep, multiple tests and not many answers as to why Maeva had so many complications.”
The family would have to go back to the hospital many times after to address respiratory syncytial virus - an infection of the lungs and respiratory tract - as well as seizures.
Having a child with chronic and complicated health issues affects the entire family. Trying to address the projected future of ongoing therapies and special needs considerations was emotional and heartbreaking. “I’d say it’s almost a grieving process. The thought of her not having a ‘normal’ life really took a toll on [us],” confided Megan.
Luckily, Maeva is supported by an incredible team of dedicated specialists and therapists, making her health concerns more manageable. Through effective occupational therapy, her mobility is minimally impaired in spite of her tethered spine, and she just needs to wear ankle braces due to low muscle tone.
Maeva’s relationship with her siblings: In spite of the many challenges thrown her way, Maeva is a spunky little girl. “She makes us smile every day,” lovingly shared her parents. Maeva doesn’t let her small stature stop her from what she wants to do, and makes her presence known to protective sisters Michaela (13), Madelyn (8) and Mia (6).
Together, ‘the M Sisters’ are an unbeatable team. Her parents laughed, “Maeva’s sisters all adore her and she absolutely loves them! Maeva always wants to be involved when they’re playing and running around.”
Maeva's Favorites: While Maeva struggles with some intellectual challenges, she’s a quick learner and catches on fast. Her team of physio, occupational, speech and nutritional therapists work together to help her eat and drink independently, walk unassisted, and use a mix of sign language and verbal words to communicate.
Much like the strong women of her home city, “Maeva is very determined and gets frustrated when she can’t figure something out. She loves to mimic us and it usually only takes a few times of teaching something new for her to get it.” Her parents proudly continued, “She has come so far and is doing amazing given her diagnosis!”
A musical little girl, Maeva is protective, fun-loving and “obsessed with our dog and cats- and chickens!” The Ryan's are fortunate to have a strong support system, making hospital stays a bit easier.
Advice for Kabuki families: When asked what take-aways she could share with other Kabuki parents, Megan thoughtfully reflected, “I have learned that I can’t dwell on what Maeva's future will look like. It sends me into a dark place.”
She advised, “Live day by day and enjoy the current.”
Her partner, Nick, added, “I think it has changed our perspective on life completely. It has really opened [our] eyes to the special needs community on a whole new level.”
Advice for parents of "typical" children: "
To those who may offer words of pity or sympathy for Maeva’s situation, the family firmly redirects the focus. “My child may [have] special needs but that does not define her.
There is way more to Maeva than all of her issues….in a lot of ways she is just a typical toddler.”
How Maeva has impacted the family: "A strong little girl with a mischievous grin, Maeva has demonstrated that she is made of tougher stuff than might meet the eye."
Better get out of the way- ‘the M Sisters’ are coming through!
Written by Randy Pinsky