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Deborah Marcus Urgent Need-Deep Brain Stimulation

Deborah Marcus urgent need for Deep Brain Stimulation treatment for severe, chronic facial pain

Many of you know my friend, Deb, through a connection to hearing loss and HLAA (Hearing Loss Association of America), disability advocacy, and writing for her own blog “
Visions of Song ” and my blog “Hearing Elmo ”. Deb is also a nature photographer and many of you may know her best through the photos she shares in social media and her blog.  One friend has said that Deb’s photos make Facebook a more beautiful place. Throughout the years, she has done wide-ranging community work, including substance misuse and abuse prevention, engagement with the Hearing Loss Association of America and hearing loss community (mentoring cochlear implant recipients), and the Brain Injury Association of America and state organizations. Deb has spent most of her life working to support and assist for those who often desperately need an advocate and friend. For those of you who have never seen her nature photos, a few are shared on this page for your enjoyment.


Not everyone knows that she has lived with facial nerve pain for many years, along with other invisible disabilities. The nerve pain, atypical and complex trigeminal neuralgia, has worsened in the last few years and has become a constant challenge and disability in her life. Deb’s chronic pain and disabilities have caused her to become terribly despondent and she struggles to maintain her equanimity, fighting depression and thoughts of suicide. She has a team of specialists who have attempted to address her pain with gamma knife radiosurgery, nerve blocks, and medication, to no avail. She recently had  consultation with a neurosurgeon at the Mayo Clinic in Jacksonville, Florida. Deep brain stimulation (DBS) is utilized in patients who have refractory pain and who are otherwise deemed good candidates, and is one of the procedures which was discussed at this visit. Due to the complex nature of Deb's condition and symptoms, the specialist is recommending pursuing another path in the follow up with her local neurosurgeon before making plans to try DBS. Deb lives in North Carolina, and is currently unemployed due to her medical conditions. She has applied for disability (SSDI) but after receiving initial denial, is pursuing appeal of the decision. This is notoriously a long, drawn out process. With no income since June, she has used up her savings reserves and is in medical and financial crisis. What Deb would love most of all is to get enough relief from the chronic, severe pain to be able to re-engage fully in life, return to making contributions to her communities, and become self-sufficient once again, as she has been all of her life. To this end, she needs help managing the costs of travel and care while receiving treatment, during recovery, and maintaining her basic living arrangements for the next several months while she pursues disability appeals. The denial stated that they recognize her condition is severe, but they are not sure that it will last more than 12 months. Deb’s advocate feels this is the “best kind” of denial because it means they do recognize that she has a severe condition, but still the appeal process must be pursued to approval. 




Deb is a beloved friend to so many, and she is so appreciative of all the care and outreach that folks have made as they learn about her situation. It is hoped that you will see your way offer a donation and to share this account and your personal connection to Deb with the people in your life who can help support her through this exceedingly challenging chapter in her life. She has written about her chronic pain journey at Hearing Elmo; posts that can be found here in Part 1 , Part 2  and Part 3


Information about Deep Brain Stimulation (DBS) can be viewed here: CLICK HERE 


A detailed list of expenses is provided below. It is based on basic living needs for the next 8 months (disability appeal can take longer, but it’s certain to take at least this amount of time) as well as the extended care needs before, during, and after DBS and other treatments and procedures that will be pursued in the effort to reduce the level of severe pain that Deb lives with and improve quality of life. 


Essential living needs: rent for room currently occupied, car and apartment rental insurance, phone (one cell with data, currently locked into contract), gasoline, cochlear implant batteries, food costs supplementing food stamps approved at least until June 2019, health insurance premium (Deb receives tax credits due to low income based on anticipation of disability approval in late 2019), co-pays, deductible. $1000/mo. x 8 months = $8000.00.


Expenses for care locally as well as at Mayo Clinic for consult and treatments: recovery can take many weeks, most intensive the first weeks per procedure. Transportation, housing while out of town for consult and care, support staff/care. Estimating 4-6 weeks overall stay in Florida if DBS is pursued, weeks of support and recovery for local medical procedures, covering food and general expenses for self and supportive help and need to pay for care service locally as well. Deb does not have a partner/spouse or children, and while friends want to help, their availability will be limited in time and scope. $7,000.00 for local and distance medical care and support needs.  


TOTAL GOAL: $15,000.00 ($8,000.00 for essential living needs and $7,000.00 for medical care and recovery needs).

Thank you in advance for gifts and sharing with friends and family. Together, our donations can make a difference and assist Deb in this urgent need for receiving life-saving care.


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Donations 

  • Anonymous
    • $50 
    • 3 yrs
  • Philip Labega
    • $50 
    • 3 yrs
  • Ricci Hellman
    • $50 
    • 3 yrs
  • Laurie Abela
    • $50 
    • 3 yrs
  • Laura Quinn
    • $50 
    • 3 yrs
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Organizer and beneficiary

Denise Burhenn Portis
Organizer
Pasadena, MD
Deborah Marcus
Beneficiary

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