Hope For The Hublers
Donation protected
The hope of this fundraiser is to lessen the heaviness on the Hubler family as they fight for Ellie's health. To be God's hands and feet (socially distanced of course) in a tangible way.
The money raised will be used to purchase a variety of gift cards (gas, grocery, and restaurants) to offset bills and ultimately be a light during this difficult COVID-era. Some of the funds will also be allocated for a gift basket of goodies for Ellie. Lori shared a list of Ellie's favorites but neither have an idea of the larger goal of gathering others to shower their family with love.
Please do not share this on social media as I'd like to keep this endeavor private but DO SHARE the link with others the Hublers know via email, private messages, and texts (as I only know a handful of their connections).
Everyone's name who contributes will be put on a card when everything is gifted the weekend of Valentine's Day.
ANOTHER OPTION in lieu of this fundraiser is to purchase something on the Amazon wish list (specific gifts for Ellie and other items for the family). These will be shipped to my house where I will collect them until gift day (16 Ramsgate, Collinsville, IL 62234).
https://www.amazon.com/hz/wishlist/ls/1UITNDF0WI7KY?ref_=wl_share
Thank you so much for considering being a part of this small fundraising effort to "carry each other's burdens" (Galatians 6:2) and for keeping the Hublers in your prayers.
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For those that may not have read Lori's latest Facebook post update on Ellie's health, the recap is below . . .
"I haven't shared much on my personal page because I feel like we are just getting by right now and each day feels so heavy and like the day before. We also feel out there on our own as we are in limbo between doctors. Ellie was diagnosed with Conversion disorder (modernly known as Functional neurological disorder) after a 5-day stay at Cardinal Glennon early December. She started out by having episodes where she would lose function of her body (paralysis) for short periods of time at the end of November. They increased in frequency until one Wednesday in December her legs didn't return back to normal. We took her to Cardinal Glennon where she was admitted. While there she started having seizures that are considered non-epileptic. It's basically like her body was ticking severely and having a panic attack at the same time. After we were released her episodes increased in frequency where she would seize multiple times a day, some were extremely hard. After we put Hannah down, she had a week of extreme episodes, one that got her an ambulance ride back to Cardinal Glennon. She spent more time in episodes that week than out of them. We started seeing other types of episodes where she would stare out In space and everything cognitive slowed down. Her response, her words, her body...that's when we also realized she was having memory lapses that consisted of hours that she couldn't remember. These centered around her episodes. (if there was a silver lining I suppose that could be in forgetting a seizure happened) She also developed fainting episodes. She faints often during her episodes which is kind of nice because they let her body relax during her often 30 minutes to an hour or longer episodes of contorting, seizing, punching, or convulsing body. Unfortunately, her brain has become kind of stuck in this pattern and struggles now with fainting outside of the seizing episodes. They have become the episodes. She can't walk unassisted as they come out of nowhere and she falls to the ground. She can't go to the bathroom alone because she passes out every time while on the toilet, same with baths. She can be talking to you and mid-word pass out for a split second, wake up and return to the conversation. She struggles with pain, pain from falling, pain from nerves, and painful headaches. It's been quite debilitating for her. And she can't stay asleep. She sleeps only for a few hours at a time.
Her anxiety has been a major factor in symptoms. FND is a software problem in the brain. There's nothing wrong with it physically. We are still learning about the disorder. We have had experiences with this on smaller levels here. I had a milder bout that took me almost a year to feel like me again about 7 years ago. I was having anxiety attacks every day and in my sleep. Noah has milder moments of paralysis that are pretty fleeting and has tic episodes. Ellie's is pretty much an extreme case. The brain does weird things to the body and it is uncontrollable but it can be retrained to react differently.
We don't have the tools yet to help with the retraining and it is hard to sit back and wait. Insurance is a hurdle, the pandemic is a hurdle, the fact that many people are struggling with mental health right now is also a hurdle as doctors are backlogged." (1/18/2021)
The money raised will be used to purchase a variety of gift cards (gas, grocery, and restaurants) to offset bills and ultimately be a light during this difficult COVID-era. Some of the funds will also be allocated for a gift basket of goodies for Ellie. Lori shared a list of Ellie's favorites but neither have an idea of the larger goal of gathering others to shower their family with love.
Please do not share this on social media as I'd like to keep this endeavor private but DO SHARE the link with others the Hublers know via email, private messages, and texts (as I only know a handful of their connections).
Everyone's name who contributes will be put on a card when everything is gifted the weekend of Valentine's Day.
ANOTHER OPTION in lieu of this fundraiser is to purchase something on the Amazon wish list (specific gifts for Ellie and other items for the family). These will be shipped to my house where I will collect them until gift day (16 Ramsgate, Collinsville, IL 62234).
https://www.amazon.com/hz/wishlist/ls/1UITNDF0WI7KY?ref_=wl_share
Thank you so much for considering being a part of this small fundraising effort to "carry each other's burdens" (Galatians 6:2) and for keeping the Hublers in your prayers.
------------------------------------------------------------------------
For those that may not have read Lori's latest Facebook post update on Ellie's health, the recap is below . . .
"I haven't shared much on my personal page because I feel like we are just getting by right now and each day feels so heavy and like the day before. We also feel out there on our own as we are in limbo between doctors. Ellie was diagnosed with Conversion disorder (modernly known as Functional neurological disorder) after a 5-day stay at Cardinal Glennon early December. She started out by having episodes where she would lose function of her body (paralysis) for short periods of time at the end of November. They increased in frequency until one Wednesday in December her legs didn't return back to normal. We took her to Cardinal Glennon where she was admitted. While there she started having seizures that are considered non-epileptic. It's basically like her body was ticking severely and having a panic attack at the same time. After we were released her episodes increased in frequency where she would seize multiple times a day, some were extremely hard. After we put Hannah down, she had a week of extreme episodes, one that got her an ambulance ride back to Cardinal Glennon. She spent more time in episodes that week than out of them. We started seeing other types of episodes where she would stare out In space and everything cognitive slowed down. Her response, her words, her body...that's when we also realized she was having memory lapses that consisted of hours that she couldn't remember. These centered around her episodes. (if there was a silver lining I suppose that could be in forgetting a seizure happened) She also developed fainting episodes. She faints often during her episodes which is kind of nice because they let her body relax during her often 30 minutes to an hour or longer episodes of contorting, seizing, punching, or convulsing body. Unfortunately, her brain has become kind of stuck in this pattern and struggles now with fainting outside of the seizing episodes. They have become the episodes. She can't walk unassisted as they come out of nowhere and she falls to the ground. She can't go to the bathroom alone because she passes out every time while on the toilet, same with baths. She can be talking to you and mid-word pass out for a split second, wake up and return to the conversation. She struggles with pain, pain from falling, pain from nerves, and painful headaches. It's been quite debilitating for her. And she can't stay asleep. She sleeps only for a few hours at a time.
Her anxiety has been a major factor in symptoms. FND is a software problem in the brain. There's nothing wrong with it physically. We are still learning about the disorder. We have had experiences with this on smaller levels here. I had a milder bout that took me almost a year to feel like me again about 7 years ago. I was having anxiety attacks every day and in my sleep. Noah has milder moments of paralysis that are pretty fleeting and has tic episodes. Ellie's is pretty much an extreme case. The brain does weird things to the body and it is uncontrollable but it can be retrained to react differently.
We don't have the tools yet to help with the retraining and it is hard to sit back and wait. Insurance is a hurdle, the pandemic is a hurdle, the fact that many people are struggling with mental health right now is also a hurdle as doctors are backlogged." (1/18/2021)
Organizer
Jessica Ambuehl
Organizer
Collinsville, IL