Support and Hope for Elliana
Donation protected
Written by Leila Maiella...
I'm sure many of you could tell more about Janis and Tony and their sweet family than I could these days. I could speak for hours on the girl she was in High School...sweet, caring, shy but outgoing all at once. I could tell you how sweet it was to watch her and Tony fall in love. How honored I was to stand up for them at their wedding and what a blessing it was when Katie was born. Unfortunately their third child, 10 year old, Elliana “Ellie” is the only child of theirs that I haven't met. But she seems like a perfect mix of her parents. For any of you that may not know Elliana is currently in a medical crisis. Ellie has been very ill since the beginning of November 2016. During a 5 day hospital stay at the end of January and beginning of February Ellie was diagnosed with Secondary Adrenal Failure. Ellie has been checked numerous times for cancer and none has been found. The doctors are also unable to find the cause for the pituitary gland to stop sending the signal to the adrenals to produce cortisol. At MUSC (Medical University of South Carolina) endocrinology also diagnosed Elliana with Primary Adrenal Failure. So not only is the brain not sending the signal, her adrenal glands are no longer functioning on their own. Ellie is in complete Adrenal Failure. In order to live Ellie must have a high dose of steroid three times a day. Any illness, or shock to her system can send her into an “Adrenal Crisis”. These two disorders are truly life and death and the family now must carry a shot in case of an emergency. But something else is wrong with this perfect little girl. She suffers from extreme pain, life threatening food allergies and fatigue. The fatigue is very common with SAI and PAI (adrenal insufficiencies) but the severe pain throughout her bones and joints is not. Her food allergies are increasing daily, even though she tests negative to all food allergies. She has even had a scope to look for EOE- a disease in the esophagus that would cause serious allergies like Ellie’s and the severe reflux she is also experiencing. She tested negative to EOE, however the steroids may already be treating the condition… but the question becomes- Why is she still reacting? Dr’s are wondering if she has some form of Mast Cell Activation Disorder. This is very difficult to diagnose and a very broad disorder. She has made so many strides towards recovery in the past few weeks but she still has a long road to travel, quite literally. The Rogers’ family is not finding the answers they so desperately seek locally in Greenville, SC so they are going to start traveling to find answers for their daughter. It pains me that we cannot be close enough to hug our friends but we can get the word out. We can pray and for those that are able we can help with the financial burden. I asked Tony and Janis if we could start this page a few weeks back, and they politely declined. But now their sweet little Elliana needs our help, and they have asked for it. Please help if you can.
I'm sure many of you could tell more about Janis and Tony and their sweet family than I could these days. I could speak for hours on the girl she was in High School...sweet, caring, shy but outgoing all at once. I could tell you how sweet it was to watch her and Tony fall in love. How honored I was to stand up for them at their wedding and what a blessing it was when Katie was born. Unfortunately their third child, 10 year old, Elliana “Ellie” is the only child of theirs that I haven't met. But she seems like a perfect mix of her parents. For any of you that may not know Elliana is currently in a medical crisis. Ellie has been very ill since the beginning of November 2016. During a 5 day hospital stay at the end of January and beginning of February Ellie was diagnosed with Secondary Adrenal Failure. Ellie has been checked numerous times for cancer and none has been found. The doctors are also unable to find the cause for the pituitary gland to stop sending the signal to the adrenals to produce cortisol. At MUSC (Medical University of South Carolina) endocrinology also diagnosed Elliana with Primary Adrenal Failure. So not only is the brain not sending the signal, her adrenal glands are no longer functioning on their own. Ellie is in complete Adrenal Failure. In order to live Ellie must have a high dose of steroid three times a day. Any illness, or shock to her system can send her into an “Adrenal Crisis”. These two disorders are truly life and death and the family now must carry a shot in case of an emergency. But something else is wrong with this perfect little girl. She suffers from extreme pain, life threatening food allergies and fatigue. The fatigue is very common with SAI and PAI (adrenal insufficiencies) but the severe pain throughout her bones and joints is not. Her food allergies are increasing daily, even though she tests negative to all food allergies. She has even had a scope to look for EOE- a disease in the esophagus that would cause serious allergies like Ellie’s and the severe reflux she is also experiencing. She tested negative to EOE, however the steroids may already be treating the condition… but the question becomes- Why is she still reacting? Dr’s are wondering if she has some form of Mast Cell Activation Disorder. This is very difficult to diagnose and a very broad disorder. She has made so many strides towards recovery in the past few weeks but she still has a long road to travel, quite literally. The Rogers’ family is not finding the answers they so desperately seek locally in Greenville, SC so they are going to start traveling to find answers for their daughter. It pains me that we cannot be close enough to hug our friends but we can get the word out. We can pray and for those that are able we can help with the financial burden. I asked Tony and Janis if we could start this page a few weeks back, and they politely declined. But now their sweet little Elliana needs our help, and they have asked for it. Please help if you can.
Organizer and beneficiary
Gina Rossol
Organizer
Las Vegas, NV
Janis Rogers
Beneficiary