Melanie's SB


Hey there! I'm Melanie Hernandez. I'm a 25 year old Social Work student living in West Palm Beach, FL....the best place in the world, in my opinion.

As you may or may not know, I have Spina Bifida Occulta, more specifically lipomyelomeningocele- the definition on Seattle Children's Hospital website is: 'A lipomyelomeningocele is a rare birth defect. A lipomyelomeningocele is a fatty mass covered in skin that is attached to the spinal cord." This has caused several underlying conditions such as the following:

-a tethered spinal cord, where my cord is stuck on a section of my spine.

-numbness of my legs.

-a neurogenic bladder, which basically means my bladder is paralyzed with the need to catheterize seven times a day.

-sacroiliitis, a subsidiary of rheumatoid arthritis, where the cells in the sacral joints of my hip are attacking themselves, causing prolonged damage and chronic pain.

Basically, I need help. 

I had surgery in July of 2015 to drain a cyst and separate my spinal cord from my spinal column. After this operation, I had a CSF leak that caused SEVERE headaches, loss of mobility, and nausea.

I've been diagnosed with CRPS, a painful condition caused by severe nerve damage that occurred during my last tethered cord surgery due to negligence and lack of monitoring. Basically, my nerves are permanently stuck in a state of hyperactive overdrive and react by sending my body painful signals to even the most regular activities, my body no longer can tell the difference between danger and normal life. The brush of sheets on my legs and the lightest of touches is extremely painful and uncomfortable to me. If left unmonitored, CRPS has the ability to damage the other nerves around it. My neurosurgeon and I are experimenting with certain nerve pain medications.
 

***(UPDATE 6/8/2017): I have been enrolled in a clinical trial for CRPS. I have been recieving an experimental IV drug in hope of reducing my pain levels and sensitivity anywhere from 80-100%.  I am completely overwhelmed and drowning in medical expenses and with another potential surgery coming up, I cannot fall any more behind.

In December of 2016, I had an autologous bladder sling. They took a piece of my leg out and used it to support my bladder. I am still paying off the balance and the other day, I received a letter saying that they will send the account to collections because I have not paid the requested amount consistently—I have applied for financial aid as well.

Due to this, I have decided to reopen my GoFundMe. I thought I was doing fine for so long, but sometimes reality hits all at once. I feel extremely low and embarrassed to have to do this, but I don't have very many options at this point. Thank you so much for being so supportive through both my ups and downs, your efforts do not go unnoticed. I am so grateful for each and every one of you. ***


These funds will mainly be used to cover my co-pays, prescriptions, physical therapy, medical bills, and imaging fees.


I wouldn't be anywhere without the amount of support by those so closely surrounding me. The depth of gratitude I have for each and every one of you is infinite.

I am eternally indebted to you for your kindness and generosity.

Take care,

Melanie
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Organizer

Melanie Alexis 
Organizer
Pompano Beach, FL
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