I came to know 21-year-old Holly Alonzo from Arkansas. Like myself, Holly suffers from NF2. At the time of diagnosis, a tumor was found at her brainstem. It was successfully removed, but Holly woke up blind.
She also has bilateral Acoustic Neuroma. First she became deaf in one ear. Now, her good ear, the one with residual hearing, is also in danger.
Afraid of becoming fully deaf, Holly is trying hard to obtain an Auditory Brainstem Implant. “A little sound would be better than no sound,� she said.
If Holly could see, going deaf won’t be so scary. But she can’t. Holly is married with a newborn. Already blinded by NF, Holly cannot bear the thought of not listening–the least she can do to communicate with and protect her child.
Holly had no prior work experience at the time of diagnosis and does not qualify for insurance. The only thing she has is Medicaid–a form of government support, but Medicaid only covers basic medical expenses.
Determined to get the ABI, Holly persistently contacted hospitals and clinics that perform ABI implantation. Unfortunately, none of the places would take Medicaid for ABIs or help her in any way. Her calls were repeatedly unattended.
Now, my doctors, Rick A.. Friedman and Marc Schwartz at House Clinic reviewed Holly’s MRIs and offered to help her. House Clinic does not take Medicaid from outstation, but my doctors would waive surgeon fees just like what they did for me.
What’s left now is hospital charges and the cost of ABI. Dr. Friedman himself does not work with the hospital, but he is going the extra mile in trying to persuade St. Vincent Medical Center to reduce the price of hospitalization as much as possible.
Even so, Holly is left to worry about paying for the ABI implant, which costs USD30,000.
Deaf and now at risk of losing my own eyesight, I empathize with Holly‘s predicament. Should I become blind, my ABI would be the only thing I can rely on.. What more when Holly has a child to care for?
I wish to help Holly. Not just by pointing fingers and making suggestions, I want to take a proactive role in getting Holly the ABI she so badly needs. On top of that I want to help Dr. Friedman in helping others.
I think geographical distances won’t be a problem. There is bound to be a way. I just have to find it. Frequently traveled to the states and now an external student of Upper Iowa University, I believe that if I try, I will find a way to help Holly.
When I came to know Holly, I noted that most only told her to call this and that place. Someone even suggested her to act sweet and beg sympathy from doctors! So even when people live in the same country, it does not always mean they can help more. Some want to help but lack the experience. That said, geographical distances should not be a hindrance from helping out another.
And I’m going to keep telling myself that. Let’s see what we can do.