Love for Everly Medical Fund
Everly Marie Hopkins was born on 2-20-2014 to Crystal and Jimmy Hopkins. At the tender age of 6 days old, she was diagnosed with Trisomy 18, also known as Edward’s Syndrome, a life limiting genetic condition. Doctors consider this diagnosis as “incompatible with life.” An additional 18th chromosome is attached to, in Everly’s case, every cell of her body. It means that the extra 18th chromosome causes life ending biologic conditions with the heart, brain, lungs and/or other organs. It is a death sentence.
After 15 days in the NICU, the family was sent home under hospice to love and comfort little Everly, or Sweet Pea, as she is affectionately known. And love they have done! Everly has her very own “bucket list” of activities and experiences her family is attempting to check off. Thus far, she has dipped her toes in ocean water, gone for a bike ride, hiked a lake numerous times, and even participated in a Nerf gun war with her brothers. She, indeed, is having a lifetime of love squeezed in a short amount of time!
Small illnesses that other babies can recover from rather quickly could turn deadly for Everly. Her body is not equipped to handle colds and viruses efficiently, let alone larger and more complicated concerns. She was struck with pneumonia and a collapsed lung at 3 ½ weeks old. Miraculously, not only did she overcome this but did so at home without a hospital stay. The family is vigilant with Everly and is mindful about keeping her safe from sickness as best as they are able.
Everly has a laundry list of other medical issues that present concerns for her as well. She has what doctors have told the family is a “very large” VSD, or hole in her heart. She also has pulmonary hypertension which for the time being is offsetting the effects of the hole in her heart allowing her to grow and to thrive. The family has been advised, however, that sooner rather than later that lung pressure will change and therefore, so will Everly’s health. The baby’s other medical issues also are cause for concern and could also be life ending. She has apnea, requires oxygen for frequent choking-like episodes daily and has severe feeding restrictions including being fed solely by an NG tube (nose) tube. Currently, she receives weekly physical therapy due to her abnormal muscle tone. She is profoundly mentally and physically disabled.
Everly continues to thrive against all odds. The medical community believes that Trisomy 18 is “incompatible with life” and some physicians even refuse to treat health problems they have based solely on the label. However, Everly is growing and enjoying life and by the grace of God has not succumbed to what medical literature states should be her outcome. She continues to be loved and prayed for by family, friends and even strangers.
The family, as you can imagine, is focused solely on her well-being and loving her and treasuring each precious day. The mom, Crystal, homeschools their two older sons, Garren, 15, and Kendan, 7. Due to the time consuming nature of both homeschooling and caring for a medically fragile child, she has found it necessary to put her tutoring business to the side. As a former teacher, she has routinely offered testing and evaluations for other homeschooling families and has needed to cease offering those services as well. The dad, Jimmy, now is the sole provider for this family of five.
The Go Fund Me account is being set up with hopes that funds can be collected and offered to the family in their time of need. Medical bills are piling up and specialist co-pays are adding up. While they do have private insurance, they were denied Social Security and Medicaid which would have covered what their insurance does not. As time progresses, their insurance will max out what they will pay to cover Everly’s healthcare costs.
The family in their quest for the best healthcare for their daughter will also be traveling to Jacksonville for her cardio care. The cardiologist that has seen Everly since birth will only offer care to a certain point because of her diagnosis. They have managed to find a cardiologist group who is willing to care for Trisomy 18 babies on a case by case basis. Crystal sent all of Everly’s medical records to the group for presentation and Everly was accepted as a patient.
Please consider assisting this family as they continue to cherish the time they have with their daughter. Allow them the chance to love without worry about the medical bills and expenses. Donations can be made via the Go Fund Me account or by mailing a check directly to them to the following address:
Everly Hopkins
3905 Tampa Road #2696
Oldsmar, Fl 34677
To continue to follow Everly’s story, check out
www.caringbridge.org/visit/everlyhopkins
www.facebook.com/EverlyHopkins
