Help save Avi's life
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Please help The Gillespie family get their lives back. Avielle is battling Diabulimia, a dangerous combination of bulimia with Type 1 diabetes. Avielle was diagnosed with Type 1 diabetes about 5 years ago. She has developed several autoimmune disorders. Tiphanie, her devoted mother, was diagnosed with Parkinson's this year. Avi is an aspiring fashion designer but her many health challenges have made it impossible for her to follow her passion and ability in a school environment. Tiphanie and Jeremy have devoted all of their energy, love, and finances to getting Avielle support and their medical bills are piling up as insurance does not cover many of the expenses Avielle's continued hospitalizations incur.
We are asking for support as The Gillespie's insurance company, after approving Avielle for treatment in CO at the specialized Diabulimia clinic, notified the Gillespie's yesterday that they will not cover Avi's medical expenses out of state. Our local eating disorder facilities will not accept Avi because she is diabetic and Children's Hospital does not know how to help her recover as they do not specialize in this complicated and life-threatening disorder. We, the Gillespie's friends and family, humbly invite you to give what you can to help the Gillespie's keep Avi in the facility that is their last hope for saving Avi's life.
Here is the current dire situation in Tiphanie's words;
Avi has been battling Diabulimia” (also known as ED-DMT1) which is a life-threatening combination and unhealthy practice of withholding insulin. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors or they may only manipulate their insulin.
For Avi, this has been her battle for a better part of 3 years. Much of this grabbed hold of her after ending up in the hospital two times after dangerous lows. One of which lead to a diabetic coma. After that, she became very fearful of going low and never waking up. At that time our answer to that struggle was for Jeremy and me to test her blood sugar every night at 12 am and an again at 3 am. Which kept her feeling safe and secure. When she turned 16 everyone involved family and the medical team all agreed to turn more responsibility for her care over to her.
As that fear began to grow, she started withholding her insulin to try and stay higher. Which in turn started an endless road of misery that lead to rapid weight loss with normal or heavy eating, A high A1C, Physical exhaustion, Increased appetite (her body’s cells are essentially starving), Mood changes, Decreased concentration and motivation (this could be seen in the changes in academic performance and behavior), Recurrent DKA without any explainable cause. Avi has been in DKA so much I just stopped telling anyone. I can honestly say in the last year I drove my child to the hospital in DKA 6 times. Our last two trips to the ER I mentally considered that this time I might not bring her home again.
Which is why we as a family have made this huge decision to seek treatment in Denver CO. As always her battles are rare and unique. There are only about 6 facilities in the USA that treat this type of Eating Disorder.
Everyone Struggles and this will never ever change. How you face that struggle can always be improved. A few days ago Avi and I flew to Denver Colorado with a hope and a prayer. Please keep us in your positive thoughts. I was there for two days. Avi will be there most of the Summer at the Eating Recovery Center. I will be joining her again in July and will be living there for about a month to support her. Most likely I will be staying and the Ronald Mcdonald House when I return Colorado.
Avi has stated she is making a conscious decision to openly and honestly talk about this. She is asking for positive energy and support as she goes for an inpatient stay to work on her T1D and eating disorder.
Avi has been very clear no secrets, no shame, only honesty about who she is and that she wants to be whole again. I have held off sharing any of this with anyone. She never has. The adults in her life perpetuated the silence. Not wanting to make her vulnerable. When I told her this, she laughed at me and said "but I am vulnerable Mom. There is no hiding it that is who and how I am right now. Mom, I am learning that by being honest about it maybe it won't always be that way." Wow, I love this kid she is always teaching me.
So once again lets step into the light as a family.
Tiphanie Gould-Gillespie
We are asking for support as The Gillespie's insurance company, after approving Avielle for treatment in CO at the specialized Diabulimia clinic, notified the Gillespie's yesterday that they will not cover Avi's medical expenses out of state. Our local eating disorder facilities will not accept Avi because she is diabetic and Children's Hospital does not know how to help her recover as they do not specialize in this complicated and life-threatening disorder. We, the Gillespie's friends and family, humbly invite you to give what you can to help the Gillespie's keep Avi in the facility that is their last hope for saving Avi's life.
Here is the current dire situation in Tiphanie's words;
Avi has been battling Diabulimia” (also known as ED-DMT1) which is a life-threatening combination and unhealthy practice of withholding insulin. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors or they may only manipulate their insulin.
For Avi, this has been her battle for a better part of 3 years. Much of this grabbed hold of her after ending up in the hospital two times after dangerous lows. One of which lead to a diabetic coma. After that, she became very fearful of going low and never waking up. At that time our answer to that struggle was for Jeremy and me to test her blood sugar every night at 12 am and an again at 3 am. Which kept her feeling safe and secure. When she turned 16 everyone involved family and the medical team all agreed to turn more responsibility for her care over to her.
As that fear began to grow, she started withholding her insulin to try and stay higher. Which in turn started an endless road of misery that lead to rapid weight loss with normal or heavy eating, A high A1C, Physical exhaustion, Increased appetite (her body’s cells are essentially starving), Mood changes, Decreased concentration and motivation (this could be seen in the changes in academic performance and behavior), Recurrent DKA without any explainable cause. Avi has been in DKA so much I just stopped telling anyone. I can honestly say in the last year I drove my child to the hospital in DKA 6 times. Our last two trips to the ER I mentally considered that this time I might not bring her home again.
Which is why we as a family have made this huge decision to seek treatment in Denver CO. As always her battles are rare and unique. There are only about 6 facilities in the USA that treat this type of Eating Disorder.
Everyone Struggles and this will never ever change. How you face that struggle can always be improved. A few days ago Avi and I flew to Denver Colorado with a hope and a prayer. Please keep us in your positive thoughts. I was there for two days. Avi will be there most of the Summer at the Eating Recovery Center. I will be joining her again in July and will be living there for about a month to support her. Most likely I will be staying and the Ronald Mcdonald House when I return Colorado.
Avi has stated she is making a conscious decision to openly and honestly talk about this. She is asking for positive energy and support as she goes for an inpatient stay to work on her T1D and eating disorder.
Avi has been very clear no secrets, no shame, only honesty about who she is and that she wants to be whole again. I have held off sharing any of this with anyone. She never has. The adults in her life perpetuated the silence. Not wanting to make her vulnerable. When I told her this, she laughed at me and said "but I am vulnerable Mom. There is no hiding it that is who and how I am right now. Mom, I am learning that by being honest about it maybe it won't always be that way." Wow, I love this kid she is always teaching me.
So once again lets step into the light as a family.
Tiphanie Gould-Gillespie
Organizer and beneficiary
Rebecca Barrett Luckenbach
Organizer
Cincinnati, OH
Tiphanie Gould-Gillespie
Beneficiary