Day of Giving 2019
When a child is hospitalized, their family’s world stops, but mouths still need to be fed and bills still need to be paid. On December 18, AdventHealth for Children's Day of Giving will help meet urgent needs for these families. This is your chance to help families in our community.
Tune into iHeart Media's Magic 107.7FM on December 18 from 5:30 to 10:00am for our live radio remote from AdventHealth for Children. Local celebrities will be waiting for your call.
Your generosity provides real help right when it's needed through the Pediatric Assistance Fund at AdventHealth Foundation Central Florida. For example:
Can provide a tank of gas for a parent to drive their child to weekly appointments.
Can deliver toiletries and basic necessities to families during their child’s hospital stay.
Can cover the cost of a family’s monthly utility bill.
Can buy a family groceries for a month while their child is receiving life-saving treatments.
Can assist with car repairs so a family can ensure their child continues the care they need.
Can relieve a rent payment for a parent who can’t work because they are at their child’s bedside 24/7.
Angie Lopez was concerned when her two-year-old son, Ezekiel didn’t want to eat and complained about stomach pain every day for a week. After being told she had nothing to worry about at an Urgent Care, Angie took Ezekiel to the emergency room at Nemours Children’s Hospital because she knew something was wrong with her son. After running 70 different tests over a three-day period, Angie received the shocking and devastating diagnosis for her son: acute liver failure. Ezekiel was severely jaundiced.
Ezekiel was then transferred to AdventHealth for Children. His liver function began to improve, and he was discharged shortly before his third birthday. Angie was relieved. However, just one week after he was discharged his follow-up visit showed his numbers began to worsen. He was admitted into the hospital again and had a liver biopsy to determine the state of his liver. Angie and her husband, Alex, couldn’t believe it when they were told their son only had 40% liver function. Time seemed to stand still as the couple had to make quick decisions regarding their son’s health. Meanwhile, Angie decided to put work on hold to take care of her son.
“In that situation, when your child is sick, you would do anything to make them better. Your priorities change and no matter what you have to do, you just want your child to get better.”
Ezekiel received a health evaluation and was placed at the top of the transplant list. Doctors were telling Angie she had a few days to decide if a liver transplant was the right course of action for her three-year-old. The next day, doctors said they had a match. Everything was happening so fast; Angie and Alex began working with a transplant coordinator who made them feel comfortable and answered all of their questions. The couple prayed about it, talked to their doctor and ultimately made the decision to go ahead with the transplant surgery.
Ezekiel became the third pediatric transplant patient at AdventHealth. Post-transplant Angie could see a huge difference in her son, he wasn’t yellow anymore! Ezekiel recently celebrated his one-year anniversary, post-transplant. He enjoys placing with race cars and is a happy, energetic little boy.
Angie and Alex are overwhelmed and grateful for the support they received during this emotional journey from friends, family and even strangers in the community.
Sophia was born with a cleft palate and perforated ear drums when she was just a toddler. She had to undergo two corrective palate surgeries and two tympanoplasty ear surgeries before turning 2 years old. However, it wasn’t until Sophia was 8 that she started experiencing irregular heartbeats. Sophia and her mother, Melissa, were then referred to a cardiologist in which Sophia was told she had an irregular heart murmur that had to be repaired through a Patent Ductus Arteriosus (PDA) procedure. During this procedure, they discovered other cardiac concerns. After extensive genetic testing at age 11, Sophia received a diagnosis—Loeys-Dietz syndrome. Loeys-Dietz syndrome is a genetic disorder that affects the connective tissue in the body. This syndrome has affected Sophia in several ways, including enlargement of the aorta, aneurysms, and life-threatening conditions.
Sophia’s journey with this rare disease has been complicated. She has had numerous surgeries including the most recent installation of a pacemaker, defibrillator for her heart and three spinal fusions for severe scoliosis. Due to a dissection of her aorta, she now has an artificial aorta made of synthetic material that remodels the veins in her heart. At one-point Sophia was in a medically induced coma for about 5 days which was a very scary time for the family.
Sophia, a 15-year-old sophomore in high school, has been able to remain strong and often uses humor to cope with her diagnosis. When she’s not at the hospital, she is focusing on being a normal sophomore in high school. Recently, Sophia went into cardiac arrest at a Shawn Mendes concert, her most favorite celebrity! Luckily, EMS arrived within a minute and were able to resuscitate her. Her mother Melissa is amazed at how much Shawn’s music has helped Sophia.
“The excitement of the concert was too much for her I guess. If only Shawn Mendez knew that he keeps her going with all these surgeries though. Every time she goes under anesthesia, she chooses one of his songs. His songs do help her cope, and I wish I could thank him for that.”
Melissa says moving forward all they can do is monitor the disease with specialists, get continued testing through CT’s, MRI’s yearly and take medication for beta blockers. She had to take a completely different position at work just to be able to focus on caring for her daughter.
“I did have to take a different position with about half of the salary that allows me to work from home intermittently. I went from being in a Director Role with my current company to now being an L&D Coordinator. I am so blessed to work for such a great company with amazing people who understand and support, allowing me the flexibility to care for Sophia. It is a bit tough trying to balance the two”.
Although Sophia did miss an entire semester due to hospitalizations, she still managed to catch up and be on the honor roll last year without letting her diagnosis hold her back. Her mother Melissa says doctors are continually amazed at this strong teenager.
“They are amazed at Sophia because she’s this little miracle. With everything that can happen with her diagnosis, they are amazed at how well she is doing.”
Daniel was a normal, energetic nine-year-old boy when he began complaining to his mom about thigh pain. She figured he pulled a muscle playing with the neighborhood kids and just needed to rest. Daniel got an opportunity to attend the NFL Pro Bowl to see his favorite player. That day, Catherine knew something was seriously wrong when Daniel asked to go to the hospital for his leg pain instead of watching his favorite team at the game.
Catherine remembers the day vividly when DJ was diagnosed with cancer. Doctors had found a tumor in his thigh that tested positive for bone cancer and Catherine fell to the floor. She looked at the doctor and said, “save his life.” The next few months were a blur, Catherine had to utilize the Family and Medical Leave Act (FMLA) for work as she focused on her new priority- getting her son better.
While Catherine and DJ stayed in the hospital, Catherine’s parents took care of DJ’s seven-year-old sister, Jessica. It was hard. DJ asked his mom, “Am I going to die?” He went through 30 weeks of chemotherapy and often just wanted to go home.
Once his tumor was removed it was 95% necrosis which let the oncologist and surgeon know the chemotherapy was working! As Catherine focused on caring for her son, they had no idea there was another mountain in the distance. DJ’s best survival rate would involve the amputation of his leg. DJ and his mom decided to go ahead with rotationplasty, a surgical procedure used to treat bone tumors in children that occur near the knee.
“We thought chemotherapy was the most difficult challenge we would have to face and that was nothing. Daniel had a 12-hour surgery to remove his limb. Moving forward, physical therapy was the most challenging. He had to learn to walk with a prosthetic and re-learn how to do day to day things that we often take for granted.”
DJ not only learned how to walk again, but found a lifelong mentor in his physical therapist, Trevor Hicks, at AdventHealth Sports Med and Rehab. Through weekly physical therapy appointments, Trevor helped DJ learn to function with his new prosthetic leg. DJ decided he wanted to run the Star Wars 5K at Disney with Trevor. With a crowd of people cheering him on, DJ finished the race.
“Watching him cross that finish line, words can’t express how it makes you feel,” his mother says.
In 2016, Remy’s shoulder began to hurt. Since she was a 10-year-old, her family thought her heavy backpack was causing her pain. When the pain didn’t go away, doctors did an x-ray which showed a large tumor in her shoulder. An MRI showed her doctor’s that Remy had Ewing’s sarcoma, an extremely rare bone cancer. Remy was given a 37% chance of survival.
Through 17 cycles of chemotherapy in 10 months and six weeks of radiation, Remy maintained a positive outlook. She took one day at a time, focusing on staying positive and making every day count. As of February 2018, Remy is beating the odds and officially in remission.
Dakota was diagnosed at 3 years old with Acute Lymphoblastic Leukemia on Easter Sunday April 16, 2017. It all started with what her family thought was a simple ear infection. It turned out to be much more. Her fever took a unusual amount of time to subside and they started noticing bruises popping up that weren’t healing. An appointment was scheduled with her pediatrician, but before they made it, her nose began to bleed uncontrollably. Dakota was rushed to the emergency room where her family heard those dreaded words: their baby had leukemia.
Dakota has endured intense chemotherapy treatment and started long term maintenance in December 2017. She will continue treatment until June 2019. Dakota remains her sassy and spunky self throughout her diagnosis. She has shown so much strength and grit and is an inspiration to everyone who meets her. Some of her favorite things are her two doggies, dancing and singing along to music and going to Disney with her family. She aspires to be a veterinarian when she grows up.
On Valentine’s Day 2015, Grayson discovered a lump on his neck. He was only 10 years old. His parents immediately called their pediatrician who referred them to the Emergency Department at AdventHealth Orlando. After two days in the hospital, Grayson was diagnosed with Stage II Classic Hodgkin’s Lymphoma.
Grayson’s received six months of chemotherapy and radiation. After his initial treatment, Grayson went into remission for about nine months before developing a cold. His cancer came back and was now Stage III and had spread to his chest, lungs, abdomen and spleen. Several rounds of chemotherapy later, Grayon’s doctors told him he would need a stem cell transplant.
Three days before his stem cell transplant, Grayson decided he wanted to document everything on a YouTube. This was an opportunity for Grayson to tell his story in his words and help spread awareness for pediatric cancer. Grayson is now 13 and in remission, playing baseball and doing everything he can to make up for the years he spent fighting cancer.