Welcome to, Life Without A Fork’s, funding initiative for families working to survive, “The Swell Life!”
This connect point has been set up so that angioedema sufferers who are seeking financial assistance may have a communal place to share with the world the unique challenges many of us face when it comes to living with such a debilitating condition while still trying to maintain shelter, pay bills, buy food, and afford medications.
We ask that you please choose a cause, or three…smiles…and do what you can to help. You should know, the stories shared here are much more of an overview than the actual depth of struggle and trauma in which these people live! You’d be absolutely rattled if we gave you the full Monte and believe you me, it’s a heart-wrenching thing to witness.
Thanks so much, in advance!
~The Life Without A Fork and Idiopathic Angioedema Advocacy Groups.
Vanessa Williams: Recurring Idiopathic Angioedema, Nutrition Deficiency, Filmography, Advocacy
“While Vanessa has been advocating for everyone she can daily and since 2009, more often than not, going to bed crying from starvation, each day she awakes swollen and visually impaired from the crying as well as from her middle of the night histamine dumps. Living with angioedema has made my mom’s struggles so very real — she foregoes sharing her hardships with the world but I get to see firsthand what both the disease and the work do to her. She chooses to share only her love, in the stead. But please know they exist! She is very ill, very tired, fighting an uphill battle with advocacy, health, and finances and she needs your help today!
Ever working to survive this harsh condition and grieving the loss of the dynamic person she once was—teacher, corporate executive, model, actress and consultant, Vanessa is now disabled as a result of the disease. She is extremely underweight and undernourished missing many meals and at 5’10” weighing in at only 124lbs., not only because she is, most sadly, unable to tolerate 95% of the world’s foods, as they are triggers (allergens) for her, but also because she can not afford to buy food from the pricey markets to which she is limited.
However, more than her own suffering, it hurts her most, knowing that there are so many people out there who do not know they have angioedema or are new to it and are gripped with fear and completely losing their minds! This is why, Life Without A Fork Documentary, is so important–people need to know they are not alone in this and can find important information on how to survive IAE and mast cell activation disorders!
Having been unsuccessful with each of our former fundraising endeavors and it has truly baffled us that, since 2009, so many people have been witness to my mom’s (and mine) hard and, I would say, tireless work, but she is sick with this condition and the work has indeed taken it’s toll on her now failing body. I write this and the tears begin. I do not know how much energy, let alone time, she will have to complete this film project and it means absolutely the world to her to try to make a change for others in her lifetime which, in turn, means the absolute world to me.
My mom and I have grown to know and love many fellow-sufferers. I have also come to know that many people, friends, family, and fans alike, are rooting for us to succeed. How very awesome and we thank you.
The challenge still remains with the support I need from each and everyone of you! It gets to be disheartening when it seems like people can get help with just about anything from raising thousands of dollars to fix a lamp to overly funded causes getting much more than they need. Our noble cause, I dare say, has been overlooked three times too many! Why? The IAE’s comprise 80% of all forms of this potentially fatal disease.
We ask for monetary assistance and also need help with many other things as well! We need: people reaching out to the media on our behalf, daily | Bloggers | MacBook Pro’s | GRaids | Software–FCP X, Premier, Motion, etc. | Music | Grant writers (I’m great at it yet it is but one more thing that falls on my lap) | Filming equipment–a couple of Canon EOS’ would be great, The RED, would be love! 😉 | Committed volunteers.
So, may you bring leftovers for lunch for a day or so and donate that $10 you may have spent to help save and improve upon quality of lives of the many people with the rare, potentially fatal condition, idiopathic angioedema and help make my mom’s dreams of brining right attention to IAE a reality?! Do you have a dollar you can donate? May you give what you can and do it, today?!”
~Katya Williams, Youth Advocate, Executive Producer, #DoSomething
Jonelle Spencer: Recurring Idiopathic Angioedema | Treating with Expensive Hereditary Angioedema Medications
“I am first and foremost a single mom of 15 years. The father has not ever seen her in all of these years. This being said Having this disease is very frightening to my daughter. I’ve always worked full time and was in college for nursing. Then to go on for my PA. I’m unable to work any more than 3-4 hours a day.
I have idiopathic Angioedema with anaphylaxis. Mine in non histamine responsive. Which means epi pens don’t work. I basically swell up everywhere. But the emergency ones are in my face and mouth. Currently I’m being treated with Hereditary Angioedema meds which are about 12k a dose. Both are rare. Even more rare mine is this bad. I hurt and tire easy. And when I’m swelling it doubles and I can’t work when I am, well because this can take my life very easy. In the last month it’s become worse and more life threatening”…Click below to learn more about Jonelle Spencer’s story.
Annie Williamsi: In Crises with Hereditary Angioedema, PCOS, PTSD, Thyroid Cancer, Bi-Polarism, and more.
“Please join us in our efforts to provide hope and healing for my awesome sister, Annie Williams. She has been dealing with ongoing health issues for the last 10 years, and she is only 23.
Her diagnoses follow in chronological order–
PCOS- Polycystic Ovarian Syndrome (Diagnosed Oct, 2011, after 4 years of searching for answers to her ever worsening symptoms)
Bi Polar Disorder — (Misdiagnosed as depression while on an LDS Mission and was treated with multiple ‘wrong’ medications for over a year)
PTSD (Due to sexual assault which occurred three weeks after returning home from her mission. She also suffers from emotional, physical, and mental trauma caused by anti-psychotic medications that were prescribed for her and were taken as directed)
Hereditary Angioedema (A rare, incurable auto immune disease that creates full body hives and swelling of hands, feet, face, and throat which can be fatal, which was diagnosed about 2 years ago)
Thyroid cancer – (was discovered Feb 2016, and in April 2016 her thyroid was completely surgically removed, and was discovered to have metastasized and involved 13 cancerous lymph nodes after 45 lymph nodes were removed)
After her surgery, Annie was unable to tolerate the prep for radio active iodine treatment, which required her to discontinue her natural medications (including Q96) that effectively treat her BiPolar Disorder and PTSD, and she was left extremely weak, sick, unable to eat, and suicidal.
After years of horrible side effects from pharmaceutical medications (which she has realized her body can not tolerate), and serious discouragement from the ‘doctor’ run around, she has research and learned much about her conditions and made the decision to pursue Natural and Alternative treatments for her cancer, and other health issues.
Although Annie has had jobs that she absolutely loves, she has often been unable to work due to chronic symptoms. Her wonderful employer, Barnes & Noble, and her managers there, have been extremely gracious, understanding, and loving to her through it all. She has lost approximately 50lbs since her Cancer surgery, and is struggling to survive day to day, but has much hope due to her fabulous boyfriend, loving & supportive family, and especially her amazing new Doctors.
Until last month, Annie has been covered by our parents’ insurance, but that has expired and she is currently without coverage. Although she is pursuing other insurance options, she is in immediate need of updated tests and Cancer screening, as well as the costs of alternative cancer treatments and lifestyle (extreme clean eating and cancer killing diet, multiple supplements, iv’s, injections, tests, medications, and office treatments). She has a follow-up appointment with her surgeon at Huntsman’s Cancer Institute and ongoing appointments with her Naturopathic Physician and Nutritionist, these expenses continue to add up along with debt from several years of medical bills that she and our parents are attempting to pay off.
Through the years my parents have been paying for many of her needs but have recently moved home from a traveling job and started a new business (so they can be home), therefore funds are limited at this time. Any contributions to this gofundme account will be greatly appreciated. Thank you all for being such amazing family, friends, acquaintances, and strangers.
Help spread the word!” ~ Peggy Smith
My Life with David And Noah: The Karen Lorenita Project:
“Hi. It truly means the world to me that you are willing to share the link to help us. We are really going trough a tough time and sadly my #HAE is getting worse day-by-day. I also started having seizures last month and my insurance won’t pay for all the tests I need to get done nor for some of the specialists I have to see. I also have to pay out of pocket for my Cynrize since insurance only covers half that cost. We lost our home last year and last week we lost our storage unit cause we couldn’t come up with the money to pay for it and we had everything in there. ;( All we want is to be able to give our boys a place to call home … but with my husband being the only one working and paying for everything it is just impossible for us to come up with the money we need for a deposit on a apartment and to buy everything we lost in the storage unit.
Once again, thank you sooooo much for doing me the favor of sharing this!”
Thank you for remembering to donate directly to Life Without A Fork so that we may be able to help so many others in need!
Life Without A Fork Is A Not-for-Profit | 501(c)(3) | Corporation
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