- N
In a nutshell -
After two years, more than 100 trips to Children's Hospital and countless work hours lost, our finances can't bear the burden of raising a child with multiple rare medical conditions alone. We are committed to only asking our community for help ONCE in this way.... and that time has to be now. A new year means a deductible reset and the reality that if you can't pay your child's medical bills, some of her providers simply won't allow us to schedule necessary appointments. Even more pressing is the reality that our inability to buy groceries is causing my breast milk to dry up and Eleanor MUST have access this source of nutrition and immunity boosters. She already suffers from medically documented malnutrition and losing access to breast milk is something she simply can't weather. She is rapidly dropping weight. I just can't wait any longer to ask for help. I can't tell you how sorry I am that I have to ask at all.
Before I post "the longer version" of this story on Facebook and CaringBridge for those who are interested in reading it, please stick with me long enough to note the following two points -
1. Please know that I desperately didn't want to have to do this until every single person who has already shown us kindness had a thank you card in their hands. I'm so sorry that I can't wait any longer and that I'm so behind in saying thank you for all the kindness we've already received. The hours in the day are so short when you have a sick kiddo and are trying to keep food in her mouth and a roof over her head. They're coming. I promise, they're coming.
2. We no longer have any extraneous expenses that we can possibly cut and we work six jobs between the two of us. But I can't bear to ask for such an incredible amount of help without doing everything I possibly can first... and there is really only one thing I haven't yet done to make our situation even fractionally more manageable. So, in the coming weeks, I'll be selling the only material thing I have that is precious to me. Yes... I'm selling my books. Our older daughter Samantha is going to help me catalog them... so please "stay tuned" for information regarding how you can buy some awesome books to help our girl. Also know also that for every $20 we raise in support of Eleanor’s care, we’ll be committing to one family hour of volunteerism with Eleanor in tow once she turns four and can better understand what it means to serve others. We will document these efforts somehow so you can see how your generosity is being paid forward. We don’t feel right asking any of you to help us until we’ve given up what is precious to us first (my books) and without committing to honoring your generosity in a concrete, measurable way.
Thank you for reading this request. If you happen to know of anyone who may be inclined to help us take care of our darling girl, please forward our plea. At this (frankly) desperate moment in time, we will take all the help we can get. We are so grateful to every single one of you for caring about Eleanor enough to take time out of your day to read about what our family is dealing with right now. May you feel the love we have for you somehow today and all days.
"The longer version" of this story will be posted both on my Facebook page and on Eleanor's CaringBridge site (https://www.caringbridge.org/visit/eleanordeterman) for those who would like to better understand how we ended up here and why we're seeking to raise and possibly exceed this particular fundraising amount.
For those of you who don't know Eleanor, she is an absurdly sweet, sunshine-filled, smarty who is as tough as a Navy Seal and happens to have multiple rare medical conditions. She has been suffering from the day she was born, but you'd never know it if you were to meet her... because she'd be too busy hugging you and naming all your body parts for you to think twice about how hard things have been for her. Her medical conditions include severe autoimmune neutropenia, which renders her body unable to fight infection; severe FPIES which causes her body to treat almost all food proteins as invaders; profound bilateral hearing loss due to autoimmune reactions constantly playing out in her ears; (these next two are still being confirmed via strict diagnostic criteria but her doctors are all but certain that she has them) MCAS which causes her body to have severe allergic responses to normal things... like heat and cold and scents and food; hyperflexibility Ehlers-Danlos which causes her severe joint pain; and we were informed by the Mayo Clinic in Rochester just two weeks ago that Eleanor is almost certainly having seizures and needs to be hospitalized to have this seizure activity monitored. We call her our little rainbow zebra unicorn... she is one of a kind in both the best ways and some of the toughest ways possible. And she could not possibly be loved more fiercely. Thank you for taking the time to learn a little about our girl.
After two years, more than 100 trips to Children's Hospital and countless work hours lost, our finances can't bear the burden of raising a child with multiple rare medical conditions alone. We are committed to only asking our community for help ONCE in this way.... and that time has to be now. A new year means a deductible reset and the reality that if you can't pay your child's medical bills, some of her providers simply won't allow us to schedule necessary appointments. Even more pressing is the reality that our inability to buy groceries is causing my breast milk to dry up and Eleanor MUST have access this source of nutrition and immunity boosters. She already suffers from medically documented malnutrition and losing access to breast milk is something she simply can't weather. She is rapidly dropping weight. I just can't wait any longer to ask for help. I can't tell you how sorry I am that I have to ask at all.
Before I post "the longer version" of this story on Facebook and CaringBridge for those who are interested in reading it, please stick with me long enough to note the following two points -
1. Please know that I desperately didn't want to have to do this until every single person who has already shown us kindness had a thank you card in their hands. I'm so sorry that I can't wait any longer and that I'm so behind in saying thank you for all the kindness we've already received. The hours in the day are so short when you have a sick kiddo and are trying to keep food in her mouth and a roof over her head. They're coming. I promise, they're coming.
2. We no longer have any extraneous expenses that we can possibly cut and we work six jobs between the two of us. But I can't bear to ask for such an incredible amount of help without doing everything I possibly can first... and there is really only one thing I haven't yet done to make our situation even fractionally more manageable. So, in the coming weeks, I'll be selling the only material thing I have that is precious to me. Yes... I'm selling my books. Our older daughter Samantha is going to help me catalog them... so please "stay tuned" for information regarding how you can buy some awesome books to help our girl. Also know also that for every $20 we raise in support of Eleanor’s care, we’ll be committing to one family hour of volunteerism with Eleanor in tow once she turns four and can better understand what it means to serve others. We will document these efforts somehow so you can see how your generosity is being paid forward. We don’t feel right asking any of you to help us until we’ve given up what is precious to us first (my books) and without committing to honoring your generosity in a concrete, measurable way.
Thank you for reading this request. If you happen to know of anyone who may be inclined to help us take care of our darling girl, please forward our plea. At this (frankly) desperate moment in time, we will take all the help we can get. We are so grateful to every single one of you for caring about Eleanor enough to take time out of your day to read about what our family is dealing with right now. May you feel the love we have for you somehow today and all days.
"The longer version" of this story will be posted both on my Facebook page and on Eleanor's CaringBridge site (https://www.caringbridge.org/visit/eleanordeterman) for those who would like to better understand how we ended up here and why we're seeking to raise and possibly exceed this particular fundraising amount.
For those of you who don't know Eleanor, she is an absurdly sweet, sunshine-filled, smarty who is as tough as a Navy Seal and happens to have multiple rare medical conditions. She has been suffering from the day she was born, but you'd never know it if you were to meet her... because she'd be too busy hugging you and naming all your body parts for you to think twice about how hard things have been for her. Her medical conditions include severe autoimmune neutropenia, which renders her body unable to fight infection; severe FPIES which causes her body to treat almost all food proteins as invaders; profound bilateral hearing loss due to autoimmune reactions constantly playing out in her ears; (these next two are still being confirmed via strict diagnostic criteria but her doctors are all but certain that she has them) MCAS which causes her body to have severe allergic responses to normal things... like heat and cold and scents and food; hyperflexibility Ehlers-Danlos which causes her severe joint pain; and we were informed by the Mayo Clinic in Rochester just two weeks ago that Eleanor is almost certainly having seizures and needs to be hospitalized to have this seizure activity monitored. We call her our little rainbow zebra unicorn... she is one of a kind in both the best ways and some of the toughest ways possible. And she could not possibly be loved more fiercely. Thank you for taking the time to learn a little about our girl.