Priscilla Avila-Posey knew early on her son, Julian, was unique from others.
He looks like a typical 5-year-old, but suffers from many severe developmental and medical issues.
He has a rare micro-chromosome deletion that has been diagnosed as autism.
He is stuck mentally at the level of a toddler. He suffers from mixed expressive receptive language disorder, auditory processing disorder, sensory processing disorder and severe anxiety.
(Kevin Weiss)
He cannot talk, potty train, dress himself or brush his teeth.
He cannot attend school, either.
For treatment, Julian sees multiple therapists — speech, occupational, physical and applied behavioral analysis — totaling about 46 hours each week.
But, that’s not enough.
To develop the skills he needs for a normal life, additional therapy is needed at the family’s Zephyrhills home, his mother said.
However, the family’s insurance plan won’t cover the therapeutic equipment that’s needed.
Avila-Posey was forced to quit her part-time job in 2014 in order to care for Julian. Her husband, Mike, works full-time.
To help with the family’s financial needs, Avila-Posey created a GoFundMe page in May.
She set a goal of $3,000 to purchase eight items, ranging from a sensory pod to a therapeutic listening program.
She didn’t expect any donations.
But, by June 30, more than $1,300 had been raised.
Donations have poured in from friends, family members, and former teachers at Zephyrhills High School.
Even perfect strangers have pitched in.
“It was very nice to see the reaction we got, and to see that people cared,” Avila-Posey said. “It makes me happy, because I know somebody is taking time out of their day to think about him.”
Already, the Posey family has used funds to purchase a Yogibo, for deep sensory input; a platform swing and stand, for sensory integration; and, a bubble column, used as a calming mechanism during therapy.
“We didn’t want people to think that we’re just asking for money,” Avila-Posey said. “We’re fine with donations, second-hand — if anybody even wanted to have us purchase them at like a cheaper rate or reused, we’re all for that.”
Besides cognitive handicaps, Julian also has numerous health problems.
Perhaps the worst is erythromelalgia, a rare condition characterized by episodes of pain, redness and swelling in various parts of the body, particularly the hands and feet.
The episodes are usually triggered by increased body temperature, which may be caused by exercise or entering a warm room.
In the Florida heat, especially the summer, Julian can only be outside for a few minutes at a time before symptoms arise.
“He has to play somewhere where there’s A/C, in order to be physically active,” Avila-Posey explained.
Julian also suffers from asthma, acid reflux, chronic constipation, chronic sinusitis, allergies, an immune system deficiency and gait disturbance.
All told, Julian sees over eight specialists for his health issues, and has already undergone six surgeries.
He goes to doctor’s appointments all over the place — from Zephyrhills to Odessa, to St. Petersburg and Orlando.
“If it’s not one thing, it’s literally the other,” Avila-Posey said.
“It’s been like nonstop. He almost doesn’t catch a break.”
Avila-Posey acknowledges there are “bad days,” when her son screams and cries endlessly — with no solution to console him.
“It’s so sad,” she said, “because it almost makes you think you’re not doing something right because you can’t fix it.”
Formerly a childcare day care professional, Avila-Posey had experience working with special needs adolescents.
That, she said, has made caring for her son “a lot less scary.”
Still, it breaks her heart to see him struggle.
The hardest obstacle, she said, is Julian’s limited understanding.
“Some days he doesn’t know what you’re saying to him,” she said.
Forming a bond with Julian wasn’t automatic from birth.
“I had to earn that,” Avila-Posey explained. “It took years to form that bond, and it’s super strong now.
“I feel like that makes it even more special, because I had to work for it. It wasn’t unconditional. It is now, but I had to establish that.”
For the most part, Julian is a happy, fun-loving boy.
It’s evident when he visits entertainment centers like Chuck E. Cheese’s, Bangin’ Bungee Kidz Zone and 2Infinity Extreme Air Sports.
He also gets a kick out of movie monsters, dinosaurs, minions and superheroes, Avila-Posey said.
“He’s got a cute little sense of humor,” she said, joyfully. “He’s got like 20 different laughs.”
Meanwhile, her son’s various obstacles create a whole new perspective on life.
“It almost humbles you a little bit,” Avila-Posey said. “It makes you step back and take a check at your attitude, like, ‘Really, what are you complaining about today? Is your day that hard?’”
In caring for Julian, Avila-Posey takes one day at a time, finding ways to make his life easier.
She also maintains her faith in him, regardless what others may say.
“Sometimes you’re your only child’s advocate and cheerleader,” she said. “Always be their voice.”
To donate, visit GoFundMe.com/supportbabyjulian.
The Posey family will also accept second-hand items, including an adaptive stroller, tablet, therapeutic listening program, climb and slide, sensory pod, crash pad and abilitation jigglers.
Published July 5, 2017
