Dear friends, family, and everyone,
Magaly and I have decided to start this fundraiser to help us on this challenging and unexpected medical journey. We are incredibly thankful for the love we have received from everyone. It means the world to us.
I am fortunate to have a stable job, that’s why we hesitated to ask for anything before. However, after 6 months of ongoing medical care for Magaly with no clear end in sight, we’ve decided to accept help to ease some of the financial burden. She had to close her business in February after falling bedridden/homebound and unable to work, leaving us with one income to depend on.
DIAGNOSIS
In 2019, Magaly, my 38-year-old wife, was diagnosed with mast cell activation syndrome (MCAS), a condition where the immune system overreacts and causes severe repeated multisystemic allergic reactions.
Later in 2021, she was diagnosed Ehlers-Danlos syndrome (EDS), a condition that affects connective tissue throughout the body, and postural orthostatic tachycardia syndrome (POTS), a condition that affects the autonomic nervous system.
Magaly was able to manage her conditions through medications, physical therapy, a very restrictive low-histamine diet, and supplements. She was very stable; we had a happy, calm life and we were even starting our adventure as foster parents.
WHAT HAPPENED
In mid-January this year, we had to pause our lives as she started reacting with a closing throat and rashes to her safe foods, showers, heat, car rides and smells, as well as having daily palpitations, blood pressure drops, pre-syncope, and random panic attacks that ultimately tanked her cortisol and left her bedridden, unable to walk for weeks.
She worked with her PCP, MCAS specialist, and functional doctor, and we found out mold exposure (which we later found at our home) and Lyme are exacerbating her condition. She tested high in mold mycotoxins and tested positive for Borrelia burgdorferi (Lyme western blot test), which we suspect she got during this past Christmas trip to Alabama.
She continued reacting severely to foods, showers and heat, having to use epi-pens and call an ambulance multiple times due to life-threatening reactions. Her MCAS specialist trialed her in different medications very slowly; however, she also reacted to these medications so she had to stop some of them.
We had to buy a new RV free of mold mycotoxins to move her in safely while we remediate our home. Right before the transition to the RV, in early June, she lost all her foods, experiencing daily full ears, flushing, mouth/throat burning, closing throat, air hunger, pins and needles, stiff legs, internal tremors, GI issues, brain fog, fatigue, etc.
She was admitted to Orlando Health for 2 days and as they said her case was complex, she had to be admitted to Mayo Clinic in Jacksonville for a few days. They were able to stabilize her at Mayo and she was able to eat again two foods and a medical nutritional shake (still experiencing some allergic reactions and debilitating symptoms).
WHAT’S NEXT
She was tentatively diagnosed with autonomic/vasomotor disorder and bradycardia, and referred to multiple specialists in Mayo for underlying conditions with the nervous and immune systems as well as to rule out any structural issue. We are moving to Jacksonville in the RV for appointments, labs, testing and procedures. She will also continue working with her practitioners for MCAS, mold, and Lyme.
Through all this, sometimes in tears and sometimes in hope, my wife has been fighting everyday to keep going. We wholeheartedly believe that recovery is possible with the right treatments, getting to the root causes, time, patience and faith. As she says: “Our bodies are designed to heal.”
EXPENSES
Expenses already paid:
Ambulance 450
Quest bloodwork 150
Functional doctor – (3) appts 420
Functional labs (vibrant total tox) 799
MCAS naturopath – (1) appt 250
MCAS functional nutritionist – (1) appt 118
Compounded medications 260
MCAS/EDS/POTS specialist – (3) appts 600
Immunologist – (2) appts 500
Primary doctor – (3) appts 90
Nervous & limbic system programs (6 months) 975
Medical nutritional shake (1 month) 395
Medical supplies (oximeter, blood pressure cuff, ice packs, compression socks, medical-grade air purifiers) 691
In-home nurse for IV fluids (5) visits 875
RV downpayment 10k
RV furnishing (dehumidifiers, cooktop, ice machine, electrical/water connections, awnings, u-traps, w/d combo) 5k
Total paid = $21,573
Expenses to pay:
Ambulance / emergency visits 852
Orlando Health hospital stay 1,030
Mayo Clinic hospital stay 2,344
Blood work 832
Functional doctor – (3) appts 420
Functional labs (OAT, Dutch, GI Map) 1,208
Lyme Igenex tick-borne panel 1,970
MCAS naturopath – (3) appts 750
MCAS functional nutritionist – (3) appts 354
Nervous system program (3 months) 288
Medical nutritional shake (3 months) 1,185
MCAS coach/therapist – (6) sessions 750
Immunology – (2) appts 130
POTS clinic – autonomic reflex screening 2k
Neurology – CSF & CCI screening + MRI & non-contrast MRA carotid artery 3k
ENT consult – (2) appts 130
IV fluids visits – (6) appts 300
EDS clinic – (2) appts 130
GI consult – (2) appts 130
Infectious disease specialist – (2) appts 130
Mold remediation 12k
RV monthly payment + park fees (3 months) 7,338
Estimated total to pay = $37,271
TOTAL = $58,844
THANK YOU
We are so grateful for your support, either donating, sharing this campaign, and/or keeping us in your prayers. Thank you so much for helping us navigate the next steps towards getting more answers and ultimately healing.
With love,
Wade & Magaly
