I am starting this campaign to help my younger sister, Pam, who has faced a tough ordeal that no one should ever have to go through. Suddenly, without warning, my parents were awakened one night to the sound of Pam having a major seizure. This was in 1977, and Pam was a very bright and active eight years old. Things were never the same again…for her or anyone else.
After Pam’s diagnosis of a brain tumor by the doctors at Johns Hopkins Hospital, she underwent major brain surgery that was loaded with complications. Quite frankly I’m surprised she survived the multiple operations that resulted from some mistakes and infections. The silver-lining in her ordeal was that the tumor was a benign astrocytoma; the down-side was that the surgery left Pam with major permanent hair loss, marginal use of her left arm and leg, and some functional deficits. After a long period of recovery, Pam returned to a supervised-normal life, graduated from high school, and even had a boyfriend for a while.
I have to give a lot of credit to my mother, whose natural protective instincts did not insulate Pam from adapting to the real world she would have to face for many years to come. Pam found a job after graduation at IHOP cleaning tables. She even learned to drive a car with some simple handicap devices installed. Pam even saved-up and bought her own car. Eventually Pam was employed by my parents, where she worked as a receptionist for twenty years, paying her income and social security taxes. My parents insisted that Pam retain her self-esteem by working gainfully and not become a ward of the state.
Not that Pam didn’t have enough going on with her condition already, she started losing her balance and falling about two years before my parents sold their company in 2010. Pam’s neurologist at Hopkins attributed these falls to her medicines, and regularly altered dosage levels. The falling patterns continued to increase in severity for the next five or so years; many bones were broken during that time, but the doctors said that there were no more seizure medicines to try. My mother was getting very upset and refused to accept that Pam’s problem was totally medicine related. It was heartbreaking to watch Pam suddenly fall over backwards and slam (like a falling tree) on the floor…at least once a day. Even worse I can’t imagine how Pam felt living with the knowledge that at any moment she might body-slam the floor.
Then, about a year ago, some enlightenment arrived. It was always known that brain tumors ran in my father’s family, but there was no additional thought given to that anomaly. It wasn’t until my father mentioned casually to my mother that he was diagnosed with venous malformations in his brain that my stepfather put two and two together and started researching. He discovered a known genetic disorder that caused immature weak blood vessels to form berry-like clusters prone to seep blood and interfere with the neurological function of healthy surrounding brain tissue. Pam’s falling and balance problems were now clearly identified, we thought; all we needed was an MRI to confirm our suspicions. Pam’s neurologist would not order one, still thinking Pam had a seizure medicine problem. We had a real “Catch-22” situation.
Undaunted, my mom and step-dad, continued looking for help. A clinic in Florida would schedule an appointment after receiving a referral and medical records from Hopkins, which Hopkins wouldn’t send without an appointment with the Florida clinic. Again, “Catch-22.” Fortunately, my step-dad had a routine check-up appointment with his primary-care physician, who also sees Pam. My step-dad used his appointment time to explain the situation and their physician immediately ordered an MRI and gave us a neurological referral to get a second opinion. Finally…some progress! Within three days we knew the cause of Pam’s falling and balance issues; her brain was loaded with Cerebral Cavernous Malformations (also called Cavernomas or Angiomas). Mom and Dad started a new line of research into this condition, and discovered that it is a medical area that is becoming rapidly known but has virtually no treatment. Pam’s version of Angioma is the inherited form and is passed-down at a 50% rate generationally. I was fortunate; Pam was not.
My mother has made contact with the Angioma Alliance who has spearheaded the awareness of this debilitating genetic condition. Through the efforts of many families and people like my mother who won’t give up, there is new research and clinical studies searching for a treatment; much has been accomplished in a short period of time. We are hopeful that Pam will be accepted into clinical research trials expected to start in the near future; some very amazing things have already been learned by the researchers. Additionally, Pam’s transfer to the Stroke Department at Johns Hopkins has generated great interest and support by the new revelations. Johns Hopkins is now helping instead of ignoring.
Today, Pam is almost totally unable to walk, and her neurological functions in general are diminishing. My parents are determined to keep Pam at home, with my mother providing Pam with 24/7/365 care without a break. Pam can stand with support and manages to move around slowly. We know that to take the easy road of institutionalizing her, Pam would lose muscle function rapidly and become irreversibly incapacitated, even if treatment becomes available.
We are facing a time dilemma. Whether Pam will succumb to her condition first and have to be institutionalized or a treatment from the research studies arrives is the big question. Some of you are probably aware, or can figure out, that my mother is determined that the treatment option is the only acceptable answer. In the meantime Pam must remain vertical and active. This is the reason we are asking for your help.
Six months ago Pam used almost all of the money she had saved over the years to travel for stem cell treatment. It cost just under $20,000. While the treatment provides little benefit for the Angioma issue directly, Pam’s physical condition improved quite dramatically after treatment; even her hair started to grow back. We think we can prolong our ability to care for Pam at home, while research identifies a treatment, if she is more physically strong and we can keep her active. We think two more stem cell treatments will help us beat the clock. Each follow-up treatment is spaced six months apart, and has a slightly discounted cost of about $18,000. Any unused funds will be donated to the Angioma Alliance so that others may be helped.
It is my hope that Pam’s friends would be able and willing to help Pam, who has endured almost a lifetime of adversity…always with a smile and kind word for others.
- Carolyn Hall
- Pat DeCarlo
- Susan Thomas
- Carolyn Hall
- Lynn Krause
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