To a new parent’s ears, few sounds are as precious as hearing their baby speak for the first time. Rylan Anne was over a year old when she said her first words, but they were worth the wait. Sure, there had been “red flags” over the past year, certain milestones Rylan wasn’t meeting like the other kids her age. But once she became verbal her parents breathed a sigh of relief. She called everything a “cat” and would babble along, entertaining herself for hours. Then, just like that- she stopped.
Chris and Rose Smith had to face some difficult realizations. It wasn’t easy for them to accept the notion that something might be wrong with their perfect 18-month-old daughter. They sought out a children’s psychologist who passively suggested Rylan probably fell somewhere on the autism spectrum. That wasn’t a satisfactory answer for the Smiths. They wanted to know why their daughter had stopped talking altogether; why she acted differently than other kids. They needed answers to questions they didn’t know how to ask.
Fate stepped in and brought a pediatrician into Rylan’s life whose background was in neurology. He took one look at her chart and asked if Rylan had been checked for Rett syndrome. Rett syndrome is a rare genetic neurological disorder that almost exclusively affects females. Typical features of Rett are repetitive hand movements, seizures, no verbal skills, and difficulty putting on weight. The list of symptoms read like a roster of Rylan’s “quirks.” Before the test results even came back, Chris and Rose knew in their hearts that this was what plagued their beautiful daughter.
Rylan was diagnosed with Rett syndrome days before Christmas 2013. It was a devastating blow. Over the holidays, the family accepted what this would mean for the future of their daughter. She would never leave home; she would never speak. She would live a life very different than the one they imagined for her. They would never hear her say “mama” or “daddy.” There were so many opportunities that were taken from their daughter before she even got a chance to fight for them.
In the end, they decided to mirror their daughter’s strength and move forward without looking back.
Now 4, Rylan lives a full and happy life. Her days are spent blissfully, playing with younger brother Maddox and big sister Ava. Every day she sets the example of positivity, which is how she earned the nickname “Smilin’ Rylan.” She takes everything in, and you can watch her wheels turn as she understands it. But there’s no way for her communicate anything back. “That’s the hardest part,” Chris tells us.
In Birmingham, there’s another little girl living with Rett syndrome. Although she’s only one year older than Rylan, it was apparent she was much more advanced in her development. Chris and Rose found out she had a Tobii, a device that syncs and responds to the user’s eye movements to speak. Essentially, it gives the gift of communication. The parents immediately looked into purchasing one for their daughter. It had a hefty price tag of $15,000 and insurance wouldn’t cover a dime. Their hearts sank. This was the key to their daughter’s future, and there was no way they could afford it. Chris was disheartened that his daughter’s life “would be limited to how much money I could make.”
So fate stepped in again on Rylan’s behalf. At a party that she and Chris attended, Rose met someone who took an interest in her life with a daughter affected by Rett syndrome. Rose was touched that this man, David, had such compassion for her daughter. But what she didn’t know then was that David was an Alabama Chiver, and that conversation had just changed the trajectory of her daughter’s life. The next day, David posted about this little girl’s inspiring story on Facebook. Shortly after, Rose received a call from Sean who handled the meet ups for the Alabama chapter. He had seen David’s post and was so moved he wanted Rylan to be the beneficiary of their next meet up in Huntsville. They raised $8,000 for the Smith family.
At the meet up Sean told Rose about Chive Charities. He suggested she look into it, and that they may be able to help Rylan. So even though it was a long shot, Chris and Rose applied. They were still reeling from the generosity of the Alabama Chivers, it seemed too good to be true that their daughter could receive more help from this one organization. Said Rose, “In my wildest dreams I never thought someone would step up like that for us.” But she was in for a surprise.
Chive Charities was happy to step up with a $21,000 grant which covered the cost of the Tobii communication device, a Snug Seat wheelchair, and a Snug Seat car seat. The wheelchair was lightyears more advanced than the one Rylan was currently using, featuring angle adjustments and suspension that would keep her comfortable and safe. The car seat was to accomplish the same goal, but while she was on the road.
It seemed almost impossible that there were so many people who wanted to do whatever they could to help one little girl, but like Rose says, “She has this aura…this energy about her. She will consume you in 5 minutes.”