Elliana “Ellie” Rogers is a sweet, vivacious 11-year-old who was mostly healthy until last year. But in August of 2016, when forest fires surrounded her home in Greenville, SC, she began to have what the doctors thought were severe asthmatic reactions in response to the smoke.
But it was far worse than they could have possibly conceived.
Ellie’s reactions continued to worsen. By December 2016 Ellie was reacting to not only smoke but many foods that she never reacted to previously, as well as chemicals, fragrances, gasoline, and more.
Because of the heavy steroids, she was forced to rely on to live, Ellie went from a very petite 47lbs to 36lbs in a matter of months. By January 2017 Ellie was admitted to the hospital for the first time.
Since then, the doctors have determined that Ellie has:
* Secondary Adrenal Insufficiency: her body doesn’t produce cortisol (This means Ellie is now dependent on steroids to survive.)
* Mast Cell Activation Syndrome: a rare immunological disorder that causes severe and sometimes anaphylactic reactions (causes severe internal burning, nerve pain, bone pain, hives, flushing, swelling, severe gastrointestinal issues, headaches, blood pressure and heart rate problems)
* POTS (Postural orthostatic tachycardia syndrome) which causes her heart rate to skyrocket and blood pressure to plummet
*Amplified Musculoskeletal Pain Syndrome (where the body feels more pain than it should)
Each time they try to treat one disorder, another seems to worsen. Ellie is on her 7th hospitalization now. She has been admitted for more than a month and will continue to be hospitalized as she’s tested for multiple other disorders.
All her doctors say she is a medical mystery. She can no longer eat or drink any food. She is on a feeding tube 24 hours a day. She has a central line to her heart to help the severe dizziness. She can’t leave her house except to go to the doctors because she reacts to all stores, airborne food, and what people wear on their bodies.
Ellie struggles with day-to-day struggles in ways that most of us wouldn't think twice about. When they needed to do a bone marrow biopsy, she had to endure the procedure without any painkiller because the painkiller sends her into anaphylaxis. And not only is she stuck in a wheelchair or hospital bed the majority of the time, but she's even unable to enjoy common pastimes, such as crayons or any toys or art projects with chemicals because they also send her into anaphylaxis.
She hasn't eaten in over a month now, either. Ellie went from being allergic to a few foods to being unable to eat or even smell food of any kind. She's now reliant solely on a feeding tube for her nutrition, and even that has its risks, as she had multiple reactions to her formula a few months ago.
God has continued to sustain Ellie throughout all of this, and she and her family trust that no matter how hard this path is, He is walking it with them to the destination that will be for their benefit and His glory. On that path, however, are many bumps and bruises, and they're still searching for new doctors and new treatments that might hold the promise of a bend in that path.
This means lots of traveling between research facilities as new doctors examine her and join together to try and find a way to bring this little girl back to health. And all that traveling means generally driving, as airlines struggle to provide the kind of safe environment Ellie needs to move from one place to another. Unfortunately, the family vehicle isn't big enough to fit Ellie's wheelchair and carry the family where they need to go.
One of Ellie's biggest needs is a wheelchair accessible vehicle that is large enough to fit her family's new needs. They're in the car for long periods of time, unfortunately, when they drive to different research facilities in different states, and being able to afford a vehicle that can comfortably fit everyone-and Ellie's wheelchair-would be a big help.
As you can imagine, this is a strain on the entire family. Ellie has two older siblings who still live at home. Her father is in his final year of seminary and working multiple jobs, and her mom recently had to quit work to care full time for Ellie. They’re currently in need of a new house without allergens (They’re currently renting.), the cost of all travel, and hospital procedures that aren’t covered by insurance.
Ellie's family and friends have been praying and caring for them to the best of their ability for over a year now. They've been an immense blessing to those who have continued to witness their love and faith, even in these times of trial, but the progress has been slow, and it's hard not to feel weary. Any help that you can give would be a huge blessing to this family. And if you do gift, would you mind sharing Ellie's story with your family and friends as well? Perhaps they'll feel led to help Ellie themselves. You never know what one more contact or one more gift might mean. God often uses the little pieces of love and charity to produce the most unexpected results.
From the bottom of our hearts, thank you for reading Ellie's story. Thank you for your prayers. And thank you for your love.
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