The Ria Fincham Cure and Recovery Fund
Ria’s Story (Condensed version)
In July 2012, Ria was experiencing severe back and head pain with fever. It quickly progressed to eye pain, unable to urinate, tingling in her extremities and paralyzation of her legs.
She was rushed to Ventura County Medical Center in Ventura, CA, where her condition rapidly grew worse. Emergency room doctors gathered a neurologist, infectous disease doctor and several other physicians to quickly try to determine what was causing her these serious symptoms. They ran a battery of tests and administered a variety of i.v. steroids, part chemo and antibiotic medications as they thought it to be transverse myelitis after consulting with Mayo Hospital. Incoherent and shuddering with a high temperature in the hospital bed that first night she was admitted, I climbed in to her bed and held her. I thought Lord you laid her in my arms 24 years ago, I will hold her while she is alive one last time before you take her from me. I really wasn’t sure my little girl was going to make it through the night. All I could do was pray and hope the doctors were giving her the right treatments and she would pull through. The doctors declared that she had Transverse Myelitis a neurological disorder that creates rare inflammation, lesions and tissue and nerve damage and demyelation to your spinal chord. For 2 weeks in the hospital she was given all the treatments to try to restore the function she had lost in her bladder, bowel and her paralyzed lower body. Doctors and Therapists were able to get her walking again but they were unable to help restore her bowel and bladder to function on their own. But with recovery they said this would eventually improve. The day she was released she was so happy to be going home walking slowly with a walker and looking forward to recuperating at home.
The worst was yet to come. August 7th 2012, I was summoned by her younger sister, to come home quickly as she had had another neurological attack only this time, the head pain felt like her head was being crushed down into her body and she had severe eye pain. We immediately went back to the same hospital and were met with a different group of attending doctors. All the same symptoms were back except this time it progressed to excrutiating eye and back pain, paralyzation of her legs and right arm with her hand curled in and frozen. An MRI showed that the lesions had spread to her brain and were worse in her spine. As her condition grew graver and had doctors stumped, they decided to transport her by ambulance to UCLA for further treatment and diagnostic testing.
After an extensive barage of tests, (i.e. spinal taps, MRI, CRT, Pet Scans, Evoke Potentials and extensive bloodwork) it was the NMO IG-G test that came back positive for Neuromyelitis Optica a few days later after arriving at UCLA. Because the inflammatory response went in to overdrive more of her myelin was stripped from her spinal chord, she had longer lesions in her spine and her brain this time. We spent the next few months, getting treatment. Little did we know with all the countless plasmapherisis, ritux infusion, cortecortesoid treatments, etc that the damage had been done and we couldn’t reverse the damage. Her vision was spared, no blindness or retina or cornea damage and her arm function was restored. To date she has not regained the ability to walk and she suffers from bowel and bladder dysfunction, nerve pain, depression and fatigue to name a few. Her brain lesions have caused her memory loss and other cognitive problems, her dream of finishing college is on hold indefinitely. Her fiancé found this too much for him to cope with and called off their wedding when she was at UCLA in hospital rehab. Prior to her getting ill she had just been laid off from her job that was outsourced with countless other jobs in her department to a foreign country. Despite all these sad events unfolding, she had her tearful moments but was focused on beating this disease and fighting on! She is my HERO! Being a single mom, I didn’t know how strong of a young woman I had raised along with her younger sister, Kai. I’m blessed and honored to be their Mom.
We weren’t home free, the complex health system, can shake you up if you’ve never been through the process of navigating and advocating for your loved one. We had a false sense of security and naïve about certain things that can affect the outcome of your loved one’s future health. But that’s another topic of discussion in a separate post. Ria is alive albeit still fighting this horrid unpredictable disease. Any future attacks, God forbid, would leave her with more injurious disabilities. We have been simply band aiding the symptoms with prescription medications that carry the risk of giving her more serious terminal s. diseases. So hear we are 2 years later, despite experts having clinical trials on medications that will disarm components in cells that reek havoc in your immune system look promising, most medicines don’t become available for at least 20 years. Once they pass all the clinical trials then the FDA will finally or maybe approve. What complicates matters most, is that since NMO is rare there are only so many patients that become candidates or even want to volunteer for these trials. Results are slim and hard to compare to other data when your pool of NMO patients is smaller than the trials for more widely larger populations of cancer or HIV patients. I applaud the medical experts who continue to do research in hopes of making the medicine that will cure NMO. One has stated that NMO will be the first autoimmune disease they will cure that exists amongst 400+ others. They have the definitive blood test IG-G that has the biomarkers for the disease. But the younger you are and if your disease has not met the neurodegenerative stage your chances of beating it are improved. If we wait 20 years for these medicines or the medicine that will cure NMO, Ria will be 46. With her current treatment there is no guarantee she won’t have another attack in a month, a year or 19 years down the road. Some NMO patients are “monophasic” and only have one attack; some have multiple relapsing NMO that subjects them to multiple eattacks. But there are no clear indicators if you are monophasic or relapsing since the course of the disease has no predictable course or stages. We can’t wait 20 years and we can’t wait for another attack. NMO has been like a ticking time bomb looming in the back of our minds, we have a drill like EMT’s waiting for the other shoe to drop. We as a family have to seek emergency treatment immediately . It’s no way to live.
With the grace of God we were unknowingly searching for a cure and came across a patient organization fundraising manager that mentioned the work of DIAD.org – Division of Immunotherapy and Autoimmune in Diseases in Chicago. How did this escape my radar on all the countless late night web searches? I can’t even tell you how many medical pub journals online I’ve scoured for answers, a cure. Once we looked into the autologous stem cell treatment and what it involves we realized this is not for the faint of heart. Ria and I are a team but ultimately it was her decision to move forward and reach out to them for treatment. She is brave and wants to be clear of this so she can look to the future in working on rehab at Project Walk.
We hope you will offer your support and donate so we can cover our expenses in traveling to the initial meeting with DIAD to see if she is a candidate. If she is, we will be staying in Chicago longer for the actual treatment. Our household will be on hold but the bills won’t be. Our fundraising goal is at least $50,000 for the treatment and to include any co-pays for the part our PPO insurance won’t pay as well. Prayers are welcome and appreciated. Thank you for your support.
A Day in Ria’s Life
Ria takes about 25 pills a day – immunosuppresant, pain, nerve, Gerd, esophogical and stomach medicine, anti spasmodic, anti-convulsant, anti-anxiety, anti-depressant, anti-biotic and a potassium channel blocker. IVIG infusions every 30 days. Her arm veins are wearing thin due to so many infusions both in the hospital and home for 2 years.
She eats breakfast, bathes, dresses and grooms with the help of her sister whom is her caretaker in the day, so Ria’s mom, Cindy can work her day job to keep the bills paid and her medical insurance coverage for her girls. In the evenings Ria is cared by her mother. Neither her sister or mother have any respite care or back up assistance. We even work when we are sick. Without her family’s care Ria would be institutionalized. Her family refuses to allow that to happen.
Ria spends her time ordering durable medical supplies from vendors, fixing any problems with orders, making sure her insurance is covering medications, calling in her prescribed medication refills, speaking to her doctors about any new issues that may come about her illness, going to her doctor’s appointments, seeing her speech pathologist and attending physical therapy. She experiences UTI infections frequently due to her neurogenic bladder. Doctors usually have to try oral antibiotics first but the infections have grown in strenghth and frequency that she has to now have i.v. antibiotics to avoid the infection reaching her kidneys like it did in Sept 2013. She was admitted with Septicemia (blood poisoning from infection) to UCLA Ronald Reagan hospital with a temperature of 103 that wouldn’t come down despite doctors giving her all the right i.v. medications. We prayed as a family for God to help us and he heard our prayers 2 days later her fever broke. The infection was under control but she stayed another 3 days until infectous disease specialists were sure she had no more toxins in her blood. What a scare!
She spends time with her family and does as much as she can for herself including caring for her Yorkie Bella.