Victory Lanes event will help family of daughter with rare genetic disorder
GALION — A fundraiser Saturday at Victory Lanes is intended to raise money to help the family of Ryleigh Allen, who was born in February with a rare genetic abnormality.
Ryleigh is the daugher of Mandy Allen, a 2007 River Valley High School graduate. Her father is Dennis Allen, a 2007 Galion High School graduate.
Ryleigh was born with Pierre Robin Sequence, a condition in which a newborn has a smaller than normal lower jaw, a tongue that falls back in the throat and causes difficulty breathing. It is present at birth.
“Ryleigh was born with Pierre Robin Syndrome at full term on Feb. 23,” Mandy explained. “She has almost a full cleft palate, a full-size tongue for her age and a recessed jaw making it hard for her to breathe due to severe apnea.”
The combination of the smaller lower jaw and a normal size tongue means Ryleigh’s breathing is susceptable to being blocked, which is exactly what happened when she was born.
“They did two minutes of CPR on her because she had stopped breathing,” Mandy said.
Ryleigh requires a lot of special attention. It took time to learn how to feed her and just now Mandy and her husband are getting to the point where they are comfortable letting Ryleigh sleep by herself at night.”
But some nights are more difficult than others.
In a recent Facebook post, Mandy wrote:
“I couldnt get Ryleigh to sleep for the life of me tonight, so I put her in her crib which we have elevated for her reflux and that still didnt make her happy. I flipped her on her stomach and she went right to sleep. Nights like this are the hardest on my anxiety because it’s drilled into your head not to let your baby sleep on their stomach but for Ryleigh, (especially if she’s extra tired) she doesnt have to fight to have the extra tongue control to protect her airway.”
Learn more about Ryleigh’s Quest on Facebook.
Saturday’s fundraiser at Victory Lanes is from 4-6 p.m. The bowling alley owners are allowing Mandy’s family to keep part of the proceeds from everyone who cames in to bowl that day. They also are allowing local crafters to set up booths in the bowling alley and the proceeds from that also will go to the family to help pay off bills and will assist with living expenses.
“There is going to be a silent auction,” Mandy said. “We’re still looking for more items for the auction, so if anyone wants to donate, they can call me.”
Mandy’s phone number is 740-361-2882. You can call her or her friend AnnaMarie at 740-751-1870.
Through an online support group, Ryleigh has a Pierre Robin sister named Paisley.
“She’s from Montana and was born five days after Ryleigh was born,” Mandy said. “Her mother and I chat and share information. It would be nice if Ryleigh and Paisley could actually get together one day.”
Despite her age, Ryleigh has had one surgery already, with a second one scheduled July 28.
“She’s already had her first surgery,” Mandy explained. “To make her jaw grow, they had to break her jaw and they put in a couple screws. We had to adjust and turn the screws, which forced the jaw to get a little bigger.”
“She is better since the surgery, but she still has some issues with breathing that we have to watch for,” Mandy said.
The family still uses a pulse oximeter for a while to make sure Ryleigh is getting enough oxygen, “but we’re getting to the point now where she can spend the night on her own.”
Ryleigh was born in Marion, but is now being cared for by doctors at Akron Children’s Hospital.
Due to the amount of time she spent in the hospital, Ryleigh’s dad missed a lot of time at work.
“The people at the Ronald McDonald House in Akron have been wonderful,” Mandy said. “Still, life goes on. Bills add up. There are normal expenses and we’re in the process of moving to Galion.”
It’s not been easy on Ryleigh or her family.
While in the hospital, Ryleigh actually developed a drug addiction, which required a lot of monitoring as Ryleigh dealt with withdrawal symptoms.
“That was hard,” Mandy said.
Mandy has a son, Bentley, who is 3½ years old. Mom and the kids are undergoing genetic testing to see if they are carriers of the syndrome or this was just a fluke sort of occurrence.