On September 21, four days before her 30th birthday, I took Elizabeth to the ER, after she had said she was having difficulty breathing, was waking up every day with severe headaches, and had bruises all over her body.
They took samples of her bone marrow and blood, and after that first night in the ER, Elizabeth was admitted to Touro Infirmary and diagnosed with Severe Aplastic Anemia (SAA), a rare blood disorder in which in which the body's bone marrow doesn't make enough new blood cells (in other words, the factory that produces blood cells and bone marrow shuts down).
We spent 9 days at Touro, while Elizabeth underwent a very difficult and painful treatment.
Only a few decades ago, SAA almost always resulted in death, but thanks to the advances made over the last 30 years, it is now possible for victims of SAA to eventually go into full remission if treated properly.
Currently, the best known treatment for Elizabeth's conidition is a combination of ATG, followed by Cyclosporine, and a number of other drugs intended to regulate the body and combat the side effects of the treatment itself. Read more about ATG Treatment and Cyclosporine here.
Fortunately, Elizabeth had catastrophic insurance, otherwise, we'd be trying to raise $160,000, rather than $5,000. And Elizabeth could not have come this far without the financial and emotional support of our families.
But living with Aplastic Anemia, as I've read about, and as both Elizabeth and I are now learning for ourselves, creates a number of every day obstacles, from financial expenses to significant lifestyle changes. This disorder is emotionally overwhleming: one day you are perfectly healthy, and in just a few weeks, you're life is something else all together. According to the doctor, had Elizabeth waited another week to go to the hospital, she most likely would have experienced a stroke.
I've never thought to make use of a fundraising website before now, but I was recently told that GoFundMe is often used to raise funds for medical costs, and aside from selling valuables, working as many jobs as possible, and relying on the generosity of our family's, there are no other ways I can think of obtain the funds we continue to need to pay for all the costs.
That said, both Elizabeth and I, as well as our families, would like to thank you in advance for whatever you might be willing to contribute toward her treatement. Though I am grateful that SAA is not categorized along side MDS or PNH as a cancer-related blood diseases, it also expempts Elizabeth from recieveing grants to cover these costs through the various institutions that offer such things.
Here are some of the expenses that your contributions will go toward:
- Prescription Medication (8 different medications, to be exact, the monthly cost of which is around $700)
- Weekly Blood Tests (required with treatment, but not covered by insurance)
- Clinic Visits (followup appointment twice a month with our doctor at Touro to track and analyze the effects of the treatment)
- Basic cost of living expenses (with only one of us being able to work for the last month, being able to cover the cost of bills and rent has been a challenge on it's own, not to mention the cost of groceries and basic household items; Elizabeth's condition requires a new diet, and a clean environment).
- Better Insurance: with open enrollment for Obamacare coming up in November, we are researching which plans will best cover future costs of treatment.
Hopefully, the treatment Elizabeth is currently undergoing will dramatically improve her condition, but unfortunately, treating Aplastic Anemia often requires multiple treatments, and if ATG and other therapies aren't able to fully address the problem, then the last resort will be a bone marrow transplant, but, obviously, we are doing everything we can do avoid that, and your contribution will certainly aid in this effort.
Thank you for taking the time to read this, and if you can't afford to offer funds, please know that both Elizabeth and I are grateful just to hear from you and to know that she's got a great group of people thinking of her and wishing her well.
If you'd like to know more about Aplastic Anemia, please see the Aplastic Anemia and MDS International Foundation website.
And here's Dr Neal Young, one of the world's leading specialists on Aplasitc Anemia, discussing the condition:
- Garret & Alissa Wood
- Theo and Miriam Misaresh
- Michael Dominici
- jason & tatiana jurzak
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