Photo submitted to Times Observer Rylan King.

Photo submitted to Times Observer
Nick, Briar, Rylan, and Naka King.

It’s not hard to understand why her mother Naka’s favorite thing about Rylan is that “she can make anyone fall in love with her.”

After only 15 minutes of sitting with the five-year-old from Sugar Grove, I’d been hugged multiple times and included in games with tablets and blocks.

Although Rylan is five years old, she is a member of a small demographic. She has a neurodevelopmental disorder called Duplicate Chromosome 15q, or “Dup 15q.”

Rylan was born four weeks early, on Dec. 13, 2011. Even at just five pounds four ounces, Rylan was “stunningly beautiful,” Naka said in a family profile for the Dup 15q Alliance website.

“She struggled to nurse and lost quite a bit of weight before we even left the hospital,” Naka said.

Still, Naka and her husband, Nick, were ready to take on the challenge of parenthood.

“The first few weeks were wonderful,” Naka said, “with the exception of struggling to nurse.”

But then, at about one month old, Rylan started to cry.

A lot.

“All the time, day, night, she wouldn’t sleep for more than eight hours in a 24-hour period,” Naka said.

When Rylan didn’t hit a handful of developmental milestones at three months, they waited until six months. Still, those three-month milestones were missing and the Kings were getting worried.

“We called in early intervention for services,” Naka said, “but she didn’t quite qualify.”

And then came the tests.

“We had test after test, and doctors rationalized that she was delayed from being born early, lack of sleep, or colic,” she said.

By her first birthday, Rylan was just starting to crawl and had finally stopped crying. It was also when she smiled for the first time. The Kings called for Early Intervention services again and, this time, Rylan qualified.

Rylan began Physical and Occupational Therapy services during her second year of life. But, as she continued to grow, Naka said, “we continued to see her delays. The gap between her actual and developmental age continued to widen. We went to so many doctors… countless EEGs, MRIs, blood work, neuro appointments, and no one could give us an answer.”

Finally, in December of 2014, Rylan had blood drawn at Pittsburgh Children’s Hospital for genetic testing. In May of 2015, “we got the call that she had an extra chromosome 15q,” said Naka.

Rather than being bad news, the information that Rylan had a genetic explanation for her delays was a relief.

“At least we had an answer,” Naka said.

Finally, there was a word for it, and with the word came an anchor — the ability to research, and the ability to reach out.

“To us,” said Naka, “it didn’t change anything but how we approached her future. She was still the same Rylan. I did some research and found the Dup15q2 Alliance, watched the video, and cried. I cried because everything these families were saying was my family. We fit, and it is comforting.”

Still, comforting though it was to have some kind of answer for why things were the way they were, there were still adjustments to be made.

“I had to let go of my expectations for Rylan,” said Naka. “After a year of taking everything in, I finally let my emotions go to grieve, to get angry. It was very freeing. Some days, I still cry, but most days we smile and laugh.”

Dup15q — the extra chromosome — comes with certain external signs that are classified as a syndrome. Dup15q Syndrome is characterized by hypotonia, or poor muscle tone, facial features like flat nasal bridges and deep-set eyes, high palates, and sometimes skin pigmentation. In about 20 to 30 percent of those with Dup 15q Syndrome, growth is inhibited, resulting in small stature. There can also be differences in the way that organs like the heart, kidneys, and liver form in those with Dup15q Syndrome. Fine motor, cognitive, speech and language, behavioral, and sensory processing delays are commonly reported and, according to Naka, many children with Dup15q are also diagnosed on the Autism spectrum. Attention deficit, anxiety, and seizure disorders are also common.

Dup15q is not a common disorder. That, said Naka, makes it hard to find a community that can support families affected by it with real empathy.

To that end, “Rylan’s Warriors,” a group of the Kings’ family and friends, will be hosting a benefit on Sunday, June 4, from 1 to 7 p.m. at the Sugar Grove Fire Hall. The benefit is not just to help Rylan and her family, but to help other families affected by Dup15q.

The Dup15q Alliance hosts a conference year round that not only puts families in contact with doctors and researchers specializing in the rare genetic disorder, but it helps take those families who often find themselves with no opportunity for face-to-face contact with other affected families and puts them in the same place for three days a year. This year’s conference is being held in Los Angeles, Calif., and the benefit, said Naka, is to help get the Rylan’s family there.

“Anything more than travel expenses that we raise,” said Naka, will be donated to the Dup15q Alliance to help other families affected by the same disorder.

The benefit will feature live music by Day Old Soup, with sound provided by Skip Lanphere, and special guests Matt Maloof, The Flock, Morganthus, and Slow Motion Breakdown. A spaghetti dinner will be served, and there will be silent and live auctions, raffles, 50/50’s, a bake sale, and child-friendly activities. Donations for the benefit event are $10 for adults and $5 for kids age five to 12. Children under four eat for free.

While the Dup15q journey has been a challenge for Naka and her family, she said she wouldn’t change a thing about Rylan or their lives.

“She’s so beautiful,” said Naka. “She’s taught me patience. She can make anyone fall in love with her.”

While Naka and her husband were initially told that Rylan was unlikely to ever live independently, “we like to think there’s a chance she might.”

Early Intervention services, including early intervention preschool at Don Mills Achievement Center, and physical, occupational, speech, and sensory integration therapies, have helped her blossom in the past year. Naka said they are thankful for the community of professionals that have helped Rylan on their Dup15q journey, but “we are thankful for this wonderful community” as well.

For more information on the benefit on Sunday, contact Deb Jackson at (716) 640-1508.