Save Lily’s Life!
Donation protected
Hello, we are fundraising for my daughter, Lily. Lily is one of the sweetest people you will ever meet. Every room she walks in she lights up. She knows how to make people feel special with a smile. She is one of happiest people I have ever met. Her strength inspires me everyday.
For the past 3 yrs Lily has been dealing with serious life altering health issues that have left her bedbound and in and out of the hospital, ER, multiple doctor’s offices, PT, medical testing and more. She has been diagnosed with multiple illnesses all systemic & related to an underlying genetic condition, called Ehlers Danlos Syndrome. This disorder impacts the connective tissue- connective tissue is found all throughout the body so almost any complication can arise at any time. Some of her diagnoses include (mast cell activation syndrome, postural orthostatic tachycardia syndrome, generalized epilepsy, migraines, menieres disease and more.) A lot of health care providers aren’t familiar with the condition or the systemic complications due to it being rare, which makes it ALL the more difficult getting my daughter better. She’s battled symptoms and medical struggles her entire life but it wasn’t until 3 yrs ago she could no longer push through the symptoms and became fully reliant on me being her caregiver, as underlying conditions popped up and long time symptoms kept progressing. As a family, we learned there was a lot more to her “medical puzzle”.
Lily’s case is unfortunately to complex we have exhausted all local resources, and we will have to travel across country to New York for medical care which is why we have created this fundraiser.
Lily’s most severe complications from her EDS is her nuerolgical complications and MCAS. In a month we will be traveling 25+ hrs away from home by medical ambulance care flight. She will be meeting with multiple doctors for appts and will have minimally invasive tests done (one of which to test for Eagles Syndrome) and at the end of the week she will be meeting with her nuerosurgeon to get invasive procedures- ICT (Invasive Cervical traction) and ICP (Intracranial Pressure Monitoring) done. These 2 tests are VITAL in adequately diagnosing and treating her debilitating nuerological symptoms most likely stemming from CCI (cranio cervical instability) and IIH (intracranial hypertension aka increased skull pressure) to prevent further health decline and damage to her nervous system. Based on test results- her team will craft a plan for next steps..
It’s painful seeing someone you love so much, get so sick. It’s heartbreaking beyond words. Lily’s had these nuerological symptoms all her life that have gone misdiagnosed & undiagnosed but for the past 3 yrs have been to severe to ride in cars for more than 20 mins with sunglasses a cervical collar and laying down with a blanket and pillow. She only goes out during appointments but many times we have to cancel because she’s to sick. We switched one of her medications to liquid form and chop her food into tiny pieces due to her swallowing issues getting worse. She has been on oral nutrition formula and a restrictive medical diet for the past 3 yrs due to severe mast cell activation syndrome just so she can sustain nutrients without going into anaphylaxis until we can find a doctor more knowledgeable and can get it better stabilized where we can reintroduce more foods. She’s unable to even walk down the full sidewalk on our street because of how severe the vertigo and light sensitivity is. Blurred vision, chronic fatigue, and headaches daily. Memory loss and dizzy so bad some days she’s very spacey and unable to walk downstairs. No young person should have to go through this. Nothing I could ever write could depict how ill and in desperate NEED of help my daughter is unless you were to see her person. But this is why we need your help, because it takes a village.
⬇️WHAT DONATIONS WILL GO TO⬇️
•cost for medical ambulance care flight (it’s $25,000 if our insurance pays one way)
•cost towards finding hotel that’s hypoallergenic, we will be staying for 2 weeks (due to her mcas strong smells could send her into anaphylaxis, she will be in the hospital at the end of the week but most of the week she will be at the hotel with me)
• medical expenses because we are out of network (for nuerosurgeon, ent, nuerologist, nueropsychologist, procedures, testing, PT, and more.)
• for rental car
•for food so I can cook her meals that are mcas friendly⬆️
After Lily gets her health stabilized, she plans to attend nursing school in hopes to help be there for people going through similar struggles she has faced and help advocate for them. Lily has been fighting so hard for so long to get her life back. We have been fighting so hard with her. We’d appreciate if you join us in her fight!
Any donation of any amount or sharing of our page would be GREATLY appreciated, thanks so much. We know God has big plans for Lily!
#walkbyfaithnotbysight #lilyswarriors #teamlily
For the past 3 yrs Lily has been dealing with serious life altering health issues that have left her bedbound and in and out of the hospital, ER, multiple doctor’s offices, PT, medical testing and more. She has been diagnosed with multiple illnesses all systemic & related to an underlying genetic condition, called Ehlers Danlos Syndrome. This disorder impacts the connective tissue- connective tissue is found all throughout the body so almost any complication can arise at any time. Some of her diagnoses include (mast cell activation syndrome, postural orthostatic tachycardia syndrome, generalized epilepsy, migraines, menieres disease and more.) A lot of health care providers aren’t familiar with the condition or the systemic complications due to it being rare, which makes it ALL the more difficult getting my daughter better. She’s battled symptoms and medical struggles her entire life but it wasn’t until 3 yrs ago she could no longer push through the symptoms and became fully reliant on me being her caregiver, as underlying conditions popped up and long time symptoms kept progressing. As a family, we learned there was a lot more to her “medical puzzle”.
Lily’s case is unfortunately to complex we have exhausted all local resources, and we will have to travel across country to New York for medical care which is why we have created this fundraiser.
Lily’s most severe complications from her EDS is her nuerolgical complications and MCAS. In a month we will be traveling 25+ hrs away from home by medical ambulance care flight. She will be meeting with multiple doctors for appts and will have minimally invasive tests done (one of which to test for Eagles Syndrome) and at the end of the week she will be meeting with her nuerosurgeon to get invasive procedures- ICT (Invasive Cervical traction) and ICP (Intracranial Pressure Monitoring) done. These 2 tests are VITAL in adequately diagnosing and treating her debilitating nuerological symptoms most likely stemming from CCI (cranio cervical instability) and IIH (intracranial hypertension aka increased skull pressure) to prevent further health decline and damage to her nervous system. Based on test results- her team will craft a plan for next steps..
It’s painful seeing someone you love so much, get so sick. It’s heartbreaking beyond words. Lily’s had these nuerological symptoms all her life that have gone misdiagnosed & undiagnosed but for the past 3 yrs have been to severe to ride in cars for more than 20 mins with sunglasses a cervical collar and laying down with a blanket and pillow. She only goes out during appointments but many times we have to cancel because she’s to sick. We switched one of her medications to liquid form and chop her food into tiny pieces due to her swallowing issues getting worse. She has been on oral nutrition formula and a restrictive medical diet for the past 3 yrs due to severe mast cell activation syndrome just so she can sustain nutrients without going into anaphylaxis until we can find a doctor more knowledgeable and can get it better stabilized where we can reintroduce more foods. She’s unable to even walk down the full sidewalk on our street because of how severe the vertigo and light sensitivity is. Blurred vision, chronic fatigue, and headaches daily. Memory loss and dizzy so bad some days she’s very spacey and unable to walk downstairs. No young person should have to go through this. Nothing I could ever write could depict how ill and in desperate NEED of help my daughter is unless you were to see her person. But this is why we need your help, because it takes a village.
⬇️WHAT DONATIONS WILL GO TO⬇️
•cost for medical ambulance care flight (it’s $25,000 if our insurance pays one way)
•cost towards finding hotel that’s hypoallergenic, we will be staying for 2 weeks (due to her mcas strong smells could send her into anaphylaxis, she will be in the hospital at the end of the week but most of the week she will be at the hotel with me)
• medical expenses because we are out of network (for nuerosurgeon, ent, nuerologist, nueropsychologist, procedures, testing, PT, and more.)
• for rental car
•for food so I can cook her meals that are mcas friendly⬆️
After Lily gets her health stabilized, she plans to attend nursing school in hopes to help be there for people going through similar struggles she has faced and help advocate for them. Lily has been fighting so hard for so long to get her life back. We have been fighting so hard with her. We’d appreciate if you join us in her fight!
Any donation of any amount or sharing of our page would be GREATLY appreciated, thanks so much. We know God has big plans for Lily!
#walkbyfaithnotbysight #lilyswarriors #teamlily
Organizer
Madi Wend
Organizer
Fort Worth, TX