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First, THANK YOU SO MUCH to everyone who has donated!
You have LITERALLY saved my life. I could not afford my compounded medications, and my prescribed Neocate Elemental Amino Acid Medical Food, as insurance doesn’t cover any of them.
I am SO happy to report that my current weight is 115 pounds!
I was 84 pounds in February!
Mast Cell Disorder is an autoimmune condition, so must be “maintained” through antihistamines, mast cell stabilizers, and an “as tolerated”, low histamine diet.
The ONLY food I have been able to add to my diet is that Neocate. It provides calories, and much needed protein in a readily-available form. I am still only able to consume nine other foods, so the Neocate is a much-needed addition.
I am now 17 months into this ordeal. As most of you know, I was hospitalized four times for a total of approx 45 days between May 2019 and January 2020. There were times that my body considered giving up. The only source I can call upon that has kept me here thus far is the miraculous; I simply cannot fathom any other way.
You are the lights of God’s lantern here on Earth. My physicians, my pup, my family and freinds, my “framily”, my pup, my mate– You encourage me on the darkest days, you replenish my soul, and you celebrate my victories.
I am thankful, and very, very blessed.
Last October, I was wheelchair-bound.
This October, I have HIKED a couple of times!
I also want to offer an update on my monthly medical expenses that include the Neocate cost.
Please don’t hesitate to ask for documentation of any or all of the following; I will gladly provide it.
1. $864: Neocate.
2. $1,500: all compounded medications (specifically for mast cell disorder treatment).
3. $398: all NON-compounded medications.
4. $450: physician copays and out-of-pocket appointments
5. $734: medical insurance premiums.
TOTAL: $3,946/month.
I thank you all for your support, your prayers, and your love. You have lifted me up time and again.
Blessings each and every day,
Dawn
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Help Dawn Regain Mobility and Health
Everyone faces hardships in their lives. Our amazing friend Dawn is experiencing health-related circumstances that most cannot comprehend, much less endure. She is currently battling FOUR chronic conditions with limited treatment options: Mast Cell Activation Disorder, Ehlers-danlos Syndrome, Lyme disease, and Alpha-gal allergy.
She is weathering these storms, and, yet is one of the kindest, most supportive people you will ever meet. She will give you the shirt off her back, then make sure it is to your liking. She has given so much to so many people for years, but now she is the one in need of help.
When I became sick, Dawn was one of the first people to reach out to me. We didn’t know each other but she offered her help and support. This is how she is with everyone. Whatever you are going through, she reaches out with an open heart to listen and to help. When you need a favor, she offers before you can ask. If you’re having a rough time, she wants to know the details; how you feel and how best she can specifically support you. If someone needs a safe place to stay, her door is open. Ask anyone who has ever met Dawn, and they will tell you the same story.
She spent eight years crippled by undiagnosed Lyme disease. She could not walk unassisted without falling, could not drive without going into a ditch because her vestibular system was so affected. A new tick bite in 2006 caused Bell’s Palsy, she was finally diagnosed with Lyme Disease, and placed on intravenous antibiotics that very day. Although developing blood clots from it, that line literally saved her life.
She also has Ehlers-Danlos Syndrome, a genetic connective tissue disease. Her level of function varies. On some days, Dawn can sit up and/or go for a walk, while on others her vertebrae dislocates and she must lie flat on the floor. Two neurosurgeons recommend spinal fusion surgery as soon as finances allow, including making post-op arrangements, for her travel expenses and caregiver. It is a progressive syndrome, so surgical intervention is warranted as soon as possible.
Her Ehlers-Danlos neurosurgeon and Lyme disease physician DO NOT TAKE INSURANCE. This is commonplace for these conditions; all appointments are paid out-of-pocket.
Dawn contracted Alpha-gal, a meat allergy caused by a tick bite, last year. Unfortunately, inadvertent cross-contamination with meat resulted in Mast Cell Activation Disorder, an autoimmune response in which one’s immune system recognizes foods as “foreign.” She required epinephrine at the ER for anaphylaxis that caused labored breathing and throat closure. A Epinephrine has to be given to prevent these symptoms. Her fifth emergency in June led to a 16-day hospital stay.
She is currently on heavy pharmaceutical management; her Mast Cell physician estimates several months until she reaches stability and fine-tunes her protocol, then she will begin an injectable medicine thereafter. (Interestingly, Ehlers-Danlos and Mast Cell often go hand-in-hand).
In the meantime, ALL of her medications must be compounded by specialty pharmacies to avoid inert mammalian ingredients (gelatin, glycerin, etc.) which she is now allergic to because of Alpha-gal, and are found in nearly all prescription and over-the-counter medications. This is extremely costly, as insurance pays little or nothing for compounded medicines.
Dawn has been dedicated to not only survive and support herself, but also to advocate steadfastly and unceasingly for others. She co-founded and ran a Lyme Disease support group for 8 years, was on the board of The National Capital Lyme Disease Association, lobbied with Representatives and Senators for patient-centered legislation, has done numerous TV and news interviews, and does outreach events and public presentations when she is physically able.
Following is a list of healthcare related costs, explaining the financial situation Dawn is in, and what she can expect to incur in the near future.
JANUARY-SEPTEMBER 2019 / DEBT INCURRED MEDICAL BILLS:
•Medicare insurance premiums: $2,700
•Medication, including compounded May-August: $16,600
•Neurosurgeon appointments and imaging: $4,300
•Lyme disease specialist: $1,500
TOTAL: $16,600
OCTOBER-DECEMBER 2019 ANTICIPATED MEDICAL BILLS:
•Medicare insurance premiums: $1,350
•Medications, including compounded: $3,000
•Hospitalization 6/21/19-7/6/19: $9,250
•Spinal fusion surgery and post-op: $40,000
•Lyme disease specialist: $1,500
TOTAL: $55,100
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GRAND TOTAL: $71,700
She has been without a caregiver and income-provider since March 2016, which has made life significantly harder. A donation to Dawn would give her the opportunity to get and to keep the medical help she needs to manage her conditions. Any contribution is beyond appreciated. THANK YOU!
Family and friends of Dawn Wilson are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Dawn has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
First, thank you SO much for your continued TLC and prayers.
Second, I'm thrilled to say that I am still maintaining my average weight! A-MAZ-ING.
I can still only safely consume 10 foods with reactivity or anaphylaxis due to mast cell activation disorder. It's been two years this month. BUT I have had three successful trial runs with a few frozen blueberries (such a POP of flavor, my word), so #11 might be rounding the bend.
The Neocate amino acid formula continues to go well, my seven compounded antihistamines and mast cell stabilizer medications continue to provide me with the a-ok to eat (l premedicate with them 2 hours prior to meals, and I've now reached my longest point of no hospitalizations since things revved up 2 years ago. That is a real-life-LIIFE blessing.
I shared this on FB, but wanted to dictate it here as well because mast cell can be somewhat tricky to define and understand. I hope it serves as a tiny PSA to all as well; a walking clapboard, you know. ;-)
"This is me, February 2020. 82 pounds.
On today’s date in May 2018 I got a tick bite via friend’s front yard. It gave me Alpha-gal, an allergy to all things mammal. Lyme, EDS, and tipping the scales a mold exposure at my then-residence, provoked my bod into full-blown mast cell activation disorder.
This is why I haven’t been able to consume more than 10 “safe” food for 2 years now without reactivity or anaphylaxis, why 5 hospitalizations and literally countless ER trips between May 2019-present were had (last one in Nov 2021 from handling a wool scarf, eg mammal material).
This is why chemicals, fragrances, essential oils, scented candles, and those damn scented dryer add-ins that my neighbors seem to adore, can send me into anaphylaxis.
This is why I must pre-medicate with seven compounded prescriptions prior to eating.
This is what YOU don’t want.
Please, once again, practice avid tick bite prevention. And mold avoidance and treatment.
I am still retaining my weight! It is only because of the very generous people who have financially allowed me to do so through the ability to pay for Neocate, my prescribed amino acid medical food, and the seven compunding medications I take for mast cell disorder.
THANK YOU.
You LITERALLY saved my life, and continue to do so. Without it, I would still be dying. My body still struggles with this autoimmune disorder, but I will not give up on healing, supernatural or otherwise. In the meantime, I am grateful to be able to get that caloric intake, despite still being on the same nine “safe” foods (minus three that are no longer as such) for a year and a half now. It’s not “fun”, but it is still a BLESSING to be ABLE to eat, period.
For those who have donated with financial assistance, and for those who have donated your prayers and love, THANK YOU THANK YOU THSNK YOU.
It's been much too long since I have posted an update!
I have been able to remain stable at 89 pounds with the addition of an elemental diet drink called Neocate. It's an amino acid oral nutritional supplement that I take under supervision on my Gastroenterologist. It is pretty pricey ($147 for 9 days' worth), and insurance does not cover or reimburse. My "safe" foods have been reduced to 6, and I am in my final round of appeals- this time seen by a judge- with my compounded medications. Sometimes I grow weary, I must admit. But I'm not giving up. Because of YOU and God.
I am so very appreciative to everyone for your constant support- financially and mentally. THANK YOU so much.
I have not had to use my wheelchair in 3 months!!!!!!! That feels AMAZING. My kidney enzymes are getting a little funky, and my knees still bonk out due to the combo of malnutrition, Ehlers-danlos, and prednisone (yup, still on it), but I have been able to get out and walk with the pup. It is JOYOUS to be outside! Absolutely changes my mood and perspective every time.
I will soon have my fourth injection of Xoilar, a biological medicine used for mast cell disorder syndrome and for asthma. I haven't noticed a huge effect yet, but folks say that it often reaches peak performance between the 3 and 6-month mark, so I remain hopeful and prayerful.
Love you all so much!
Thank you dearly for lifting me up. XO to the moon and all of her tidal forces.
(Shale just came in the room to offer his wagging thanks as well. :)
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Love ya
Alex Rodriguez
I love you so much Dawn and I’m in awe of your strength, perseverance and positivity. You truly are an inspiration and a light in this world!!
Debra Rice
Praying for you and reaching health and wellness : )
Hilesca Hidalgo
Love you!
Lauren Lovejoy
Your photographic art is amazing, just as you are. So thankful for this campaign for you health! Keep shining your beautiful light on this world and keep pointin and clickin at the beauty your eye finds.
Lacey Warrick
<3 you!
Molly Paryani
<3 you so much xoxo
Molly Paryani
Keep the faith! I love you so much!
Molly
STAY STRONG THE LORD IS WITH YOU!
HARRY FOSTER
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Dawn Wilson
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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