One local family is fighting an uphill battle with seemingly no end in sight.
In April, 13-year-old Zach Casillo of Fort Mill went to the Mayo Clinic in Minnesota in search of answers to his chronic health conditions. Several local businesses stepped up to help raise funds for the trip. Soon after Zach and his mom, Billie Jo, returned home from Minnesota, Billie Jo suffered a stroke.
The stroke left Billie Jo with short-term memory loss, a speech impediment and weakness in her limbs. She continues to undergo speech, occupational and physical therapy. The strength has not fully returned in her left hand and she has not yet been cleared to drive. For Billie Jo — whom her husband and sons describe as the glue that holds the family together — the process of recovery has been about doing less and resting more and adjusting to the family’s new normal, at least for now.
Rest is a foreign concept to Billie Jo, who is used to being constantly on the go managing the family and coordinating Zach’s healthcare needs – which often includes several doctor’s appointments a week. She admits the transition to a slower pace has been difficult at times.
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“I’ve had to go from pretty much doing everything to relying on others and it’s driving me crazy,” Billie Jo said.
A new plan
Zach has had more than 14 surgeries and procedures in his life. He was born with a condition called transposition of the great vessels/arteries and had open heart surgery when he was just 3 days old. According to Zach’s GoFundMe page, TGA is a serious but rare heart defect where the two main arteries leaving the heart are reversed. That surgery 10 years ago left him with only one coronary artery and many complications.
In addition to TGA, it was found that Zach has excess fluid on his brain. He also suffers from several autoimmune disorders that cause frequent illnesses and hospitalizations. Just last year, Zach was diagnosed with postural orthostatic tachycardia syndrome — after he lost all control of, and feeling, in his legs. POTS causes symptoms such as dizziness, loss of consciousness and pain and numbness throughout the body. Sometimes it causes Zach to be unable to hold a pen. A new diagnosis from that trip to the Mayo Clinci found Zach has sinus tachycardia, a condition that causes the heart to beat too fast.
Since returning home, Zach is being treated almost exclusively at MUSC in Charleston. Zach and Billie Jo have made six trips to Charleston since May for 17 appointments with 10 different specialists. MUSC has a similar coordinated care plan as Mayo, where doctors work together to treat patients from a holistic point of view.
Though the prognosis for Zach’s conditions and specific treatment plans remain largely a mystery, the family is encouraged that Zach’s care is no longer compartmentalized. An exploratory surgery will most likely take place this fall at MUSC, for doctors to get a better grasp on the extent of some of Zach’s conditions.
Help from friends
Because Billie Jo is still unable to drive, the family has had to rely on friends to drive them to and from Charleston. Zach’s appointments are often hours long and back to back, sometimes starting very early in the morning. Sometimes they must stay in Charleston for a few days at a time to attend appointments on consecutive days.
The Casillos say the “silver lining” in their struggles is the support of friends and the community. Most of their family lives in New York, so their friends are their family here, they say.
“I can’t thank them enough for everything they’ve done,” Frank Casillo said. “The time that they’ve given up with their families and spent with mine…you really get a good sense of who you can truly call a friend when you need it.”
People simply reaching out to check on how they are doing means the most to them, Billie Jo said.
“Every time we get a (message,) I tell (Zach) and it makes him smile. It’s sweet. It’s genuine,” she said.
Frank said the events of the past few months have caused him to reflect on some things, mainly that he should take more responsibility for Zach’s healthcare coordination and not allow all the responsibility to fall on Billie Jo.
“We’re fortunate enough (the stroke was) not worse,” he said. “I’m thankful for this wake-up call. It’s made me more aware.”
Zach described the past few months as chaotic and hectic.
Frank said it was like “jumping from the frying pan into the fire.”
When asked for her description, Billie Jo paused. “Life changing,” she said quietly, before starting to cry. “It made me realize that I need help.”
Kelly Lessard: firstname.lastname@example.org, @KellyLessardFMT