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Jules, Evan, and Alexis met in the most uncommon way, while they were all admitted in the hospital.
Jules, the Warrior-Advocate
Only 16, Jules Pacheco has already walked through more life than most full-grown adults. At age 7 Jules started showing signs of having complex medical conditions beginning with a diagnosis of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). Over the years she has been diagnosed with other complex medical conditions including Ehlers-Danlos Syndrome (EDS), Dysautonomia, Gastroparesis, Intestinal Hypoganglionosis, and Small Fiber Neuropathy.
This means Jules is a warrior in spirit who battles an overwhelming number of physical complications including hypermobility, frequent dislocated joints, severe and chronic allergic reactions, four episodes of sepsis due to intestinal bacterial translocation, and a GI tract that simply does not work.
Jules first found herself admitted at AdventHealth for Children after a series of convulsive syncope episodes, which are similar in appearance to seizures, but are caused by a blood pressure issue, not electrical misfires in the brain.
During her extended time at the hospital, Jules received whole person care through our Child Life Program, connecting her with highly skilled specialists that are deeply committed to providing compassionate care. Jules and many other families at AdventHealth for Children are given exceptional psychosocial support, including play therapy, developmentally appropriate education, and emotional support for the whole family.
Child Life Specialists Stephanie and Trish introduced Jules to the Teen Advisory Council at the hospital because of Jules’s vision to improve the quality of care. A year later, Jules currently serves as the President of the Advisory Council, and was an advocate for implementing “Poke Plans” to the Children’s hospital, a care-process developed for children in the hospital who need to have their blood drawn that informs the nurse what the child patient needs to feel safe.
“I want to be able to help other kids be less scared, help them feel more confident,” said Jules when she talked about her involvement on the council. Jules’ advocacy would continue when she met Evan and Alexis, who were already friends at the time.
Evan, the Warrior-Prankster.
In the beginning of 2022, Evan McKinney began holding less and less food in his stomach. What began as a dull ache, intensified into nonstop, severe stomach pain that went on for about two weeks. Debbie, Evan’s mom, scheduled an appointment with Evan’s pediatrician expecting a minor issue that could be resolved with simple treatment. After being examined, Evan’s doctor noticed a large mass in his abdomen and recommended that he should be taken to the emergency department.
Evan was 16 when he was diagnosed with Stage 4 Rhabdomyosarcoma and started treatment at AdventHealth for Children. By day two of his stay, Evan was introduced to Vanessa, a Child Life Specialist who cared for pediatric oncology patients.
For our youngest patients, play is an essential part of health and well-being. At AdventHealth for Children, Child Life Specialists create a positive, play-filled experience to reduce stress and create an environment that supports emotional and physical health.
While Evan and Jules were admitted in the hospital, Child Life Specialists organized a Bingo night for the young patients to meet. It didn’t take long for Jules and Evan to become friends. During a round of Bingo with nurses, Child Life specialists, and other patients Jules and Evan made a secret alliance to prank everyone with Nerf guns.
“Should I go get it?” said Evan to Jules. “Do it.” replied Jules. Their newly beginning friendship was already bringing laughter into the halls of the hospital as Evan began using his Nerf gun to shoot the nurses. Laughter and friendship would be the medicine that Alexis would bring to the group.
Alexis, the Warrior-Artist
Alexis has many passions, and she loves them equally, and they all tell us that she is an artist at heart. Since Alexis can remember, she has loved music, painting, baking, photography, and observing the beauty in nature. Pursuing each of these passions fully would be interrupted in 2019, when Alexis was diagnosed with Stage 4 Rhabdomyosarcoma at the early age of 12.
Chemotherapy and radiation treatment kept Alexis cancer free for one year and five months before the cancer returned in July 2022.
Alexis was admitted to AdventHealth for Children where she met our Child Life Specialists. “They make my stay a lot easier, when you have someone to hang out with.” They would also promote positive coping through play, self-expressive activities including a Music Therapy Week where patients helped write songs together and play music. “I love them so much. They have had such an impact on me that I want to be a Child Life Specialist,” shared Alexis when asked about her friendships with the Child Life team.
Child Life wouldn’t be the only connection she’d make while staying in the hospital. One day Alexis was walking down the hall in the Children’s hospital to get back to her room when she was spotted by Evan’s mom, Debbie. Debbie immediately reached out to the Child Life team to ask about her and see if she would be open to meeting Evan.
Not long after, Evan and Alexis met, but the Child Life team thought it would be a great idea to set up another game night. Finally, the three warriors met at the Children’s hospital over a game of UNO. “After they met, Evan’s whole recovery changed He’s been so different. It’s been really good for him.” shared Debbie. Since meeting, all three now serve on the Teen Advisory Council, helping to advocate for young patients who stay in the hospital.
Jules, Evan, and Alexis, and many other children in the hospital often miss out on big life events because medical conditions can keep them in the hospital for prolonged periods of time. In response to this, AdventHealth Foundation Central Florida and the Dunkin’ Joy in Childhood Foundation will be hosting a Dunkin Prom so young patients battling illness can still get dressed up, celebrate, and spend time with friends in a safe environment. Jules, Evan, and Alexis will be dressing up and even riding in a limo for prom in the hospital on May 13.
Getting to experience the simple joys of childhood when they need it most is all part of the whole care healing experience at AdventHealth. We’re so thankful for our Child Life Specialists and our partnership with the Dunkin’ Joy in Childhood Foundation who have made recovery a more positive experience for our patients and for making life together possible.