A Wildwood Elementary School student in desperate need of a complicated surgery will soon be heading to Minnesota for the 14-hour procedure.
Fourth-grader Abigail “Abby” Lacayo suffers from Hereditary Chronic Pancreatitis and Gastro Paresis and has been forced to endure excruciating pain and bloating for the past several years. The surgery will be performed Dec. 7 at the University of Minnesota’s Masonic Children’s Hospital in Minneapolis.
Abby and her parents, Gina and Denis, have to be at the facility five days earlier for preoperative appointments and testing before a team of surgeons can remove her pancreas, spleen and gallbladder, and also transplant islet cells into her liver.
Gina said the conditions Abby suffers from are rare and the surgery she is facing requires a specialized team that wasn’t available in Florida. She added that the family will be in Minnesota anywhere from six to 12 weeks after the surgery so that Abby can recuperate properly.
“We’ll also have to go back for three-month follow-ups,” said Gina, who has been away from her job at Wildwood Elementary School’s library since March.
Earlier this year, Abby was admitted to UF Health Shands Hospital in Gainesville, where her physicians inserted a stent that has relieved some of the pain. That procedure’s benefits were only temporary but it bought the family some time to work on getting the long-awaited surgery scheduled.
In June, after protracted negotiations between representatives of the Minnesota hospital and Florida Medicaid officials, a contract finally was approved for the procedure to take place. But Gina said the window of opportunity to have the surgery completed under the plan is short, so they have to do it in December to beat a February deadline when they’d have to start the entire process all over again.
If that’s not enough, Abby recently was diagnosed with dysautonomia and postural tachycardia syndrome (POTS). Dysautonomia encompasses several medical conditions that cause a malfunction of the Autonomic Nervous System. And POTS is an abnormal increase in heart rate that occurs after sitting up or standing and typically causes dizziness, fainting and other symptoms – issues Abby was having before being diagnosed and put on medications to help control the problems.
“She would stand up and faint,” Gina said. “Her blood pressure would suddenly drop and her heart rate would increase.”
Once the surgery is completed and Abby is on the long road to recovery, Gina said her daughter will be on a feeding tube for some time and probably will have to take 20 or more medications.
“She will become a diabetic overnight,” she said. “So that’s a whole other set of circumstances and medications we’ll have to deal with.”
Meanwhile, Abby’s family is facing the unknown when it comes to daunting medical bills and travel expenses. They’re already paying about $600 a month for medications the 8-year-old needs right now. And while they’re hoping to stay at a Ronald McDonald House near the hospital – which would include dinner every day – that isn’t guaranteed, so their upcoming expenses remain up in the air.
“I’ll be talking to the people at the Ronald McDonald House this week,” Gina said. “But it really depends on if they’ll have a room available for us.”
As in the past, Villager Faye Scher, a volunteer at Wildwood Elementary and a member of the charity-oriented Gilchrist West Social Club, has been doing everything in her power to help the Lacayo family. In April, she helped organize a GoFundMe account to aid in offsetting the family’s daunting medical expenses. In May, she and Elaine Buffen, another volunteer at the school, paid a visit to Abby to deliver a gift basket full of stuffed animals, books and games to help keep her busy during her long hours of treatment. And she remains in constant contact with Gina to make sure Abby’s needs are being taken care of in the best way possible.
As for the GoFundMe account, it has raised $19,836 donated by 284 people. A $1,500 donation is the largest so far, coming in about six months ago. It was followed by $1,000 donation. And more than $100 came in on Sunday alone as news of Abby’s impending surgery started to make its way through The Villages and the Wildwood community.
With the upcoming trip to Minnesota and the extended stay there, Scher encouraged her fellow Villagers and area residents to make donations to help the straight-A student who is attending classes every day despite battling intense pain and going to medical appointments most afternoons.
“I am so proud of her,” Scher said. “She missed many months last year and passed third grade with advanced classes.”
Going forward, Scher said she’s committed to doing whatever it takes to help relieve some of the stress the Lacayo family is facing.
“They have enough to worry about with her surgery and recovery,” she said. “I don’t want them to worry about daily living expenses at this time.”
For her part, Gina said she can’t say enough about the help Scher has given to her family.
“I was talking to her the other day and she said, ‘It’s going to be cold in Minnesota. I’ll order you some coats,’” Gina said. “She’s just been so amazing and I don’t know how we would have gotten through this so far without her help. She truly is an angel.”
Gina added that her family also would like to thank everyone who has and will continue to donate to their GoFundMe page, as well as those who have offered help in many other ways as well.
“Abby is very grateful for the support and so are we,” she said. “We wouldn’t be where we are without everyone’s support. We are eternally grateful.”
Those wishing to donate to the effort to help Abby can click HERE. Those wishing to contact Scher can reach her at fscher@aol.com
