Family affected by rare infant condition shares support
STAFF WRITER JENNIFER FIERRO
When Ellisyn “Ellie” Parmelee was 2 months old, her parents, Britany and Ryan Parmelee, realized the baby wasn’t reaching some of her growth milestones.
Concerned, the Marble Falls residents took their daughter, who is now 6½ months, to her doctor and then a specialist. On March 25 of this year, they learned the news that changed their world.
Doctors diagnosed her with craniosynostosis.
“It’s obviously very tough,” Britany (Hart) Parmelee said. “When you’re pregnant, you’re so excited to have a baby. Everything is so perfect, you never think about what could go wrong.”
At Ellie’s birth, the child showed no outward signs of the birth defect.
Craniosynostosis is a condition in which one or more of the fibrous, cranial sutures of the skull closes too early, causing problems with normal brain and skull growth. Premature closures in the sutures can often increase pressure on the brain.
The condition’s cause is unknown.
Statistically, one in every 2,000 babies is born with some type of craniosynostosis each year.
Despite the condition, Britany said Ellie “has exceeded all milestones. Other than the birth defect, she’s doing fantastic.”
The diagnosis means Ellie must have skull surgery to allow her brain to grow. Britany, who has a background in plastic surgery, contacted everyone she knows to get recommendations for surgeons in Texas. The couple chose a surgeon, however, who is out of their insurance network, which means more out-of-pocket expenses for them.
The Parmalees have Ellie scheduled for surgery in December when she’s 11 months old.
Facing the unknown in regard to their child’s health is tough, but the Parmalees have community support.
When Lorna and Bryan Ellis, friends of the Parmelees, heard of Ellie’s situation and the pending surgery, the couple offered to host a fundraiser, Ellie’s Craniowarrior Benefit from 1-5 p.m. Sunday, August 25, at 751 Legends Parkway in Kingsland. The event will have catered barbecue, lawn games, and more. Admission is $20 at the gate. While the Ellises created the event to help the Parmalees, Ellie’s parents have decided the proceeds from the benefit and prize giveaways should go to another family who has a child with craniosynostosis.
In an online giveaway, people have a chance of landing one of several prizes, including a guided fishing trip on Lake LBJ, a Yeti Roadie cooler, a volcanic mask face and body treatment, a Thermador dishwasher, Botox treatment, custom-made teething toys, and turquoise jewelry. Tickets are $10 each, $40 for five, or $80 for 10.
You can purchase chances on the website.
For those who can’t make the benefit, a fundraiser page has been set up at Plumfund.com.
Another way of supporting families of children with craniosynostosis is through Ellie’s Boutique.
When Britany was shopping for headbands for her daughter, she couldn’t find any that fit Ellie properly. One of the effects of the condition is a child’s head elongates. Instead of wondering why someone hadn’t come up with a headband for children with craniosynostosis, Britany took it upon herself and created a line of handcrafted bows designed to cover the birth defect.
The headbands cost $7-$10 each, come in different sizes, and can be worn by any baby, Britany said. Ten percent of the profits will be given to a family to help pay for surgery expenses.
“When Ellie was diagnosed, it was overwhelming,” she said. “I needed something to take my mind off it.”
Britany said she “couldn’t give a number” of bows she has made but is grateful to those who have purchased them.
It’s important to the Parmelees that other families who have children with craniosynostosis find the support and financial assistance they need. The couple realizes not everyone lives in a community like theirs. That’s why they are giving to other families.
“We grew up in this community. We know a lot of people in this community,” Britany said. “We’re fortunate enough to make it work with our family.”