• Hereditary Coproporphyria, a deficiency of the enzyme heme.
• Idopathic Intracranial
Hypertension, is when excess fluid and pressure is added to the brain. Which thus causes vision loss, ringing in the ears, chronic migraine, and blindness.
Deborah had neurosurgery in Nov. 2015 to have a VPL Shunt (Ventriculo-pleural shunt) put into her brain. Shortly after this procedure the tubing in her chest caused her lungs to calapsed and she spent 8 days in ICU.
On March 11th 2016 her daughter witnessed her having a seizure. Deborah was having them previously, but she didn't realize they were seizures. Now, she's been in the hospital for two weeks, but NCH (Naples Community Hospital) wants to transfer her to Jackson Memorial Hospital, in Miami, via non-emergency ambulance.
She lives in a relative's vacation home, with her teenage daughter. They receive $225 a month from child support and have no other form of income. She is inable to work due to these two rare diseases that were diagnosed in Dec. 2010 by Dr. Schiff at Jackson Memorial Hospital with Hereditary Coproporphyria. In July 2012 she woke up blind and was rushed to NCH. Deborah was diagnosed with Papilloedemia (swelling of the optic nerves) days later. A lumbar puncture barely saved her eyesight. From then she was put on 2000mg of diamox daily till November 2015. Until Dr. Norman Schatz (best neuro-optmoligst in America) told her diamox was depriving her body of oxygen and causing her potassium to plummet. She was at severe risk of having a heart attack. Dr. Schatz rushed her into Jackson Memorial Hospital ER to have a charity nueorsurgery performed to save her life and sight.
She served in the US Army from 1998 to 2008 and due to complications within family circumstances she was discharged with no VA benifit. Following her discharge Deborah moved to Naples, FL and began working for DCF (Department of Children and Families) until Aug. 2012 when her Hereditary Coproporphyria was at its worst.
Words from my mother, Deborah, "I am not looking for a miracle. Just need a helping hand so I can get back to being the mother my daughter deserves and to become a valued member of society again. Everyday I feel more and more like a burden on those around me... I want and need to feel normal again and it saddens me that it always comes down to money, that is the obstacle to a persons health and well-being. I'm not asking for a hand out, I'm asking for a hand up..."
So.. coming from her daughter, I don't want a pity party but I love her more than anything and all I want is for her to be happy and healthy again. Years ago we lived in Maryland. We'd take day trips to DC, walking the Washington mall and the many muesums there. Now, it is a struggle for her to talk a walk down our street and back.. I love her and only want her to get better.
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- Sheila Allen
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