
A Very RARE Life-Threatening Genetic Disease PLEASE HELP!!!
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Hi, my name Cedric my wife is Rocheal we live in Oregon City, Oregon in the USA, and she just got out of the Hospital YET AGAIN...
Over the past two years, Rocheal has been intubated 8 times. She been in the hospital, every single month, if not twice a month, generally staying at least 3 days to a week or more, each time.
All due to extreme swelling in her stomach, tongue, and throat. This swelling cuts off her airway which can cause asphyxiation instantly and death. Doctors initially believed, she was having severe allergic reactions, but none of the normal treatments for allergic reactions (Epi, Steroids, or Benadryl) had any effect.
After lots of gaslighting, from the doctors, and us constantly nagging for them to run more test. She was FINALLY diagnosed this year with a very rare, life-threatening genetic disease called HAE Type 3 which is the rarest form of this condition (Hereditary Angioedema with normal C1 estrase) this is a fairly new disease and thus far there are no medications specifically made to treat it.
There are only a few life saving Medications available most have had ZERO effect on her currently Takhzyro is the next one for her to try but insurance wont cover it because (technically made to treat type 1 & 2) But has showed some success in helping about 30% of HAE type 3 sufferers. This medication costs OVER $20,000 per dose, and up to over $400,000 per dose (depending where you look) and she needs it every 2 weeks. Which is over $500k-$6 million dollars a year. BEYOND Crazy I know!. But they cant garentee it will work until she trys it.
Our insurance (Medicaid) has denied to pay this multiple times and rejected all appeals. Their reasoning is because its not 100% garenteed to work. They are requiring, We pay out of pocket, for a 3 months supply. *6 doses* Once that's done, and We can prove we have bought it, and shes used it for the full 3 months, and we can show it actually worked by keeping her out of the hospital. Then and only then will they likely approve it, but it's still not garenteed.
Last November, (before she was diagnosed) she also underwent brain surgery to remove a brain tumor on my motor cortex, which ended up being a meginonma. (They found after one of her intubations because she had a migraine that wouldn't go away).
We tried to use a cheaper, medicine (For my HAE) Transmatic Acid and birth control which caused her to have, (in beginning of May), a submassive pulmonary embolism (HUGE Bloodclots)
And on top of that, if all of that wasnt enough. We just found out at the start of September (the last time she was in the hospital) She have developed and is currently in right heart failure and her heart hasn't really been healing like they hoped since the clots were removed.
Unfortunately, with all of these serious health conditions. She is no longer allowed to work or drive. She went from the breadwinner proudly supporting her family. To being the one who has financially drained them and now we are drowning in debt.
Because I am scheduled to work full time hours. We get less than 50 dollars a month in foodstamps. But since ive had to call out so much, and I'm missing so much work (on average I miss 1-2 weeks a month MINIMUM), it has caused us to fall behind on all our bills.
It has gotten so bad we've had to sell our Livingroom furniture, our living room tv and bedroom tv, my coffee and end tables, our dining rooom set, my grill, most of my tools, our kids gaming systems, and I also donates plasma every chance I get, Shr tried to donate herself but with her health Issues and all the medications they wont let her.
I am our only income source and provider, but I often miss a ton of work to be there during my hospitalizations, because when she's intubated she cant make any of her own medical desisions so I have to be there at all times to be her voice. Opon her release from the hospital I also have to be her care taker until she am strong enough to be left alone.
She is unable to drive or do anything that may cause "stress" since any type of "stress" physically... or emotionally... is the number one cause for attacks and asphyxiation... she is pretty much bed ridden unless she's being taken back to the hospital. She can't do any physical activities. She has to try to stay calm at all times and do everything she can to stay stress free, but its pretty much impossible not to stress when everythingis about to be shut off. (The last time she tried to help around our house by cleaning the bathroom and doing the dishes she was intubated for over a week and was stuck in the hospital for half the month)
Because Im scheduled to work full time hours. We get less than 50 dollars a month in foodstamps. But having to call out so much, and missing so much work (on average I miss 1-2 weeks a month MINIMUM), it has caused us to fall deep into debt.
We’re facing the threat of homelessness. We are struggling to afford basic needs like rent, food, utilities, and essentials for us and our two kids. Shes been denied by disability multiple times and she is currently appealing her last denial, but in the meantime, we need urgent help
We would be very grateful if anyone could help with anything...If we could get a few bills paid since they all have shut off notices or late fees and our landlord is threatening to evict us if we are late again...
We'd also really love to be able to pay for her medication for 3 months in hopes that it works to prove to the insurance company that It will help her if they approve it and get her through the insurance denials and appeal processes. (But with the price it's going to take a miracle)
The remainder would go to other monthly expenses such as gas for my myself to get back and forth to the hospital, and work, food, and other household, nessesities food is one of the highest priorities.
We just want to be able to feed our kids and not have to worry about when and if they will get their next meal. It makes us feel horrible that they are often home hungry with not much to eat.
We often fully utlitize all our local foodbox options and churches who have food pantries that are available every month... but A LOT of them often fall on dates or times, I am actually able to get hours at work (and I can't miss more work than I already do to go get food boxes) or Rocheal is in the hospital and I can't leave to go get them because I'm stuck at the hospital with her
Never in a hundred years would we have ever thought she would go from the breadwinner to someone who can barely get out of bed let alone function like a normal human being... Never in a thousand years would we have ever thought that she would be fighting for her life on a daily bases.... Never in a million years would we have thought she might not make it to see our kids grow up, and start their own families.... Never in a billion years would we think there might be a chance she will leave me her husband a middle aged widow racked in debt. I can't climb out of because she can no longer work to help me... never in a trillion years would we think we'd have to make a crowdfunding campaign to plead to complete strangers for their generosity to help our family at our time of need.... and never in a zillion years would we have ever thought she'd be diagnosed with a very rare life-threatening genetic disease they have no cure for....
again from the bottom of our hearts Thank you... you all are appreciated and every little bit helps! Even if you don't think it does trust us it does... Have a great day...
Thanks Again! ❤️





